Friday, October 21, 2011

Welcome to the family!

October is Down Syndrome awareness month, and in honor of the 21 chromosomes my little dudes have I wanted to take some time today and share some special traits about them to family and friends.

First off... kiddos who have DS are so danged cute!  :)  And they almost always inspire kindness and joy just by smiling your way.  Oh...... and they give the BEST hugs!

I found these visuals through an image search and thought they illustrated physical features some people with Down Syndrome may have pretty well.  Keep in mind... everyone is so different with their own strengths and weaknesses.  I'm pretty crafty, but so uncoordinated I couldn't dance to save my life!

Atlantoaxial Instability is also a concern more commonly found with peoplw who have Down Syndrome. 
"In some people with Down Syndrome in addition to a slack ligament the actual bones of the
atlanto-axial joint may be poorly developed. Theoretically these differences could make the
joint more likely to dislocate than in people without Down’s syndrome."  (  So, please no somersaults.

The second pictures mentions "diminished muscle tone" meaning they will probably feel more baby-like than muscular.  Low tone will also effect endurance.  So keep that in mind when playing... they may tired out sooner than some of their cousins.

People with Down Syndrome can talk, learn to read and write, and do so many things everyone else can.  Please encourage them to do everything!  I love this article from Treasure Valley Down Syndrome Association's October new letter.

Living with Down syndrome
dse (down syndrome education online) 
The daily lives of individuals with Down syndrome, whatever their age, are influenced by the resources available to them and the attitudes of the people they live with, the people they meet in the community and the people who support or teach them.

"My Mum asked me the other day, 'How do you feel about having Down syndrome?' I said, 'Great. I feel good about myself'. She then asked me another question, 'What do you think people should know about Down syndrome?' I thought about that one for a while because there are lots of things to know, but the first thing is that I am a human being, who has the same feelings like everyone else. But the most important thing of all is that I like to be treated like every other member of the community." - Gabrielle Clark, Australia
People with Down syndrome are people first

Adults with Down syndrome are adults first, with the same social, emotional and achievement needs as other adults. They wish to live with privacy, independence, friends and partners, and to have a useful role in their community. They should have the same rights as other adults in their community.

Children with Down syndrome are children first, with the same social, emotional and learning needs as other children. They wish to be included in the world of childhood in their community and to learn and play with all the other children in the neighborhood.

Babies with Down syndrome are babies first, with the same needs for love, security, warmth, and stimulation as all babies.

Elderly people with Down syndrome need the same care and support as all other elderly people in the community as they become more frail and their health needs increase.

People first
Individuals with Down syndrome are people first, with the same rights and needs as everyone else.  The development of individuals with Down syndrome is influenced by the quality of care, education, and social experience offered to them, just like all other people.
"My message to all of you is to keep your minds open to the idea that we should be able to make our own choices. If young people with Down syndrome are given opportunities to have many experiences in life, we will be better prepared to make decisions for ourselves. My advice to you is to encourage children and adults with Down syndrome with their dreams and goals and to believe that success comes from believing in ourselves." Mitchell Levitz, USA

People with Down syndrome should not be seen as different but rather as people who happen to have some additional needs. It is so important that this message is emphasized to all who work with children and adults with Down syndrome. They do have some special needs, which must be addressed with effective health care and education, but not in ways that exclude them from the ordinary learning and social opportunities that everyone else benefits from.

"When I was born, and the doctors told my mother I had Down syndrome, they told her I would never be able to do much of anything' I hope that in the future, doctors will tell parents of children who have Down syndrome to give them a chance to encourage them to be whatever they want to be." John Taylor, USA

The development of babies and children with Down syndrome is influenced by the quality of love, care, stimulation, education and social experience provided by their families and communities - just like all other children. If we only offered the child or adult without a disability the social and educational experiences that we have traditionally offered children and adults with Down syndrome, we would stunt development of those non-disabled individuals. It is clear that, until recently, we have been stunting the growth of individuals with Down syndrome in this way.

"I lived with Down syndrome all my life! The living part is great, but changing attitudes is tough going' I visualize a time when my friends and I are capable of choosing the right priorities and have the right skills to maintain employment and also be able to manage our own lives. We need your understanding and skills to do this. We need to be given the chance and time with priority of our dreams." David McFarland, Canada

A brighter future: Achieving more·         Learning to read and write·         Attending inclusive schools·         Finding a partner·         Participating in the community·         Working·         Living independently

In many countries, the lives of children and adults with Down syndrome are steadily improving. Advances in medical care, better understanding of the developmental and educational needs of children with Down syndrome and increasing social acceptance are providing greater opportunities to grow and learn, and to participate in society.

Many more children are attending inclusive schools with all the other children in the community and many more are learning to read, write and achieve academically than was the case even ten years ago. They are welcome in a wide range of clubs and leisure activities with their non-disabled peers.

Many more adults with Down syndrome are obtaining work, living independently, finding partners and marrying. The support that they need to achieve an ordinary adult life will vary. Some will need only minimal support from friends, neighbors and family (like the rest of the adult community) and some will need the full-time support of workers in disability services.

Over the last ten years, adults with Down syndrome in many countries have become effective advocates for themselves and for all with Down syndrome in their communities, by speaking in public, by lobbying politicians and by pressing for changes in education, improvements in vocational training and work opportunities, and a greater range of supported living options.
However, even in the more developed countries, many individuals with Down syndrome and their parents are still fighting for the right to be included in the community and in inclusive educational settings and, in some countries, they are still fighting for the right to have even basic health care and education.

All individuals·         Health care needs vary·         Developmental needs vary·         Educational needs vary·         Personalities vary·         Adult support needs vary·         Forget the stereotypes·         Down syndrome alone does not determine development 

Everyone born with Down syndrome has an extra chromosome 21, (all or part of the extra chromosome). However, the effect that this extra genetic material has on an individual's development varies widely. It is not possible to predict the future development of a baby with Down syndrome from the diagnosis alone.

Some children have few additional health problems and some have serious health problems as a result of having Down syndrome. All individuals with Down syndrome experience some degree of learning disability. Some children progress within the lower ability range of the non-disabled children in ordinary schools, some children are more delayed, with moderate to severe learning difficulties, and a minority have additional, multiple difficulties leading to even slower progress. The development of individuals with Down syndrome does not reach a 'ceiling' or 'plateau' in adolescence. Like everyone else, they continue to learn into adult life and to grow as people, if given the opportunity to do so. The so-called 'ceiling' discussed in past literature was almost certainly the result of the lack of medical care and educational and social experience.

Individuals with Down syndrome have different personalities, they are not all placid, cuddly and musical, the stereotype that you may have heard about, which probably reflected the impoverished institutional lives of the past and the behaviors that were encouraged. Some individuals with Down syndrome are confident, extravert and enjoy lively social lives, some are very keen on sports and excel at swimming, gymnastics, water skiing or riding, others are quieter or even shy and prefer quiet pastimes with a few close friends.

Each child or adult with Down syndrome must be considered as an individual and his or her needs determined as an individual, taking account of the knowledge of the possible effects of Down syndrome on development, but not assuming that Down syndrome alone will determine development.

People with Down syndrome are not sufferers

"My name is Gabrielle Clark. I am nearly 19 and I have Down syndrome, I don't suffer from it as many people say, I just have it. I was born that way. My mother told me when I was very little that I had Down syndrome (Probably the day I was born, she's like that you know, always explaining the truth). "I still don't understand completely what it means except that I have an extra chromosome and that I look a bit different and Oh yeah I'm supposed to be a bit slow, (My mum says I've never been slow in my life, but she's my mum and she's prejudiced)." Gabrielle Clark, Australia

Most individuals with Down syndrome and their families do not consider that they suffer from Down syndrome. Individuals with Down syndrome definitely do not like being described as sufferers. Children and adults live with Down syndrome. It has influenced their development but it does not cause daily suffering. Most children and adults with Down syndrome lead happy and ordinary lives, doing much the same things each day as the rest of the non-disabled community.

Labels matter

Words reflect attitudes, beliefs and values and they affect how children feel about themselves. Please remember to say:

·         'Johnny has Down syndrome, not 'Johnny's a Downs'
·         'a child with Down syndrome' not 'a Downs child' or even
        worse, 'a Downs'
·         'Jenny has Down syndrome' not 'Jenny suffers from
    Down syndrome'

The words that we use to describe people convey powerful messages. If people with Down syndrome are people first and their development is not predictable purely on the basis of the diagnosis then it is very important that our everyday language reflects this knowledge.

It is important to always refer to the person first, that is, to always talk about a child with Down syndrome or an adult with Down syndrome if it is necessary to refer to the diagnosis, not a 'Down's child' or even worse 'a Downs' (as in 'We've got a Downs in our school', for example).

Children and adults with Down syndrome hear how we talk about them and it affects their self-image and self-esteem. If you had Down syndrome how would you like to hear yourself and the condition described? Please take a minute to reflect on this question.

The term Down syndrome is in common use because Dr. Langdon Down first described the condition. Traditionally, the term was 'Down's syndrome' for many years but all English speaking countries except the UK have moved to Down syndrome in recent years, reasoning that Langdon Down neither had nor owned the condition so the possessive form is not appropriate.

Copyright © 1996-2011 Down Syndrome Education International.
Down Syndrome Education International is a UK registered charity, number 1062823.

Since the boys have been in an orphanage for most of their lives they will need extra love and teaching to figure things out.  So dear family, please take an opportunity to teach them how to share, use a fork, not color on walls, and please teach them that they belong.  It's my hope that we can all be patient with this huge transition and keep teaching in mind and as our first response.

I haven't been given medical history, but they have said they boys will probably be small for their age and wearing approximately a 3T in clothing... but will hopefully fill in once eating nutritious grub.  Because they live in another country, I'm sure there will be language barriers to overcome, and there may also be cognitive delays.  They may need a little extra help, but they will learn.  Being in an orphanage for so long usually means there was a lack of stimulus, so they may be behind motorically as well... and may need to learn how to climb stairs, dress themselves and even potty train.  The boys may have never been exposed to certain sounds or textures.  So we will all have to be teachers about everything!

We are so very blessed to have such loving family and friends.. Truly Father orchestrated this plan.  He knew who we needed to be able to carry out His plan.  We love you and are so grateful for the ongoing support you each have offered through this process. 

I know these boys will bless our lives as we experience their love and accept them.  With these boys to lead and guide us to Father... we will all be happy together forever.  One big family.

Wednesday, October 5, 2011

You'll never quite know...

Today my spirit grew.  I was feeling a bit lost and frustrated with paperwork for the adoptions....  I have been praying that those helping provide the paperwork would be inspired to sense urgency in my specific papers, that I would be steadfast and diligent with the work, and always, that my boys will feel my love for them...... and today was full of answers.  As I was driving to work I got a call stating this document would be ready, then at work more documents would be ready, and an appointment could be scheduled as soon as next week!  And Summer rescued me by providing me with directions.... and powerful prayer.  Thank you all for following the promptings Father sent.  You were the answers to my prayers as you acted upon that inspiration.  I know my Father is mindful of me and the desires of my heart.  I know He hears and answers my prayers.  I know, like Hollie knows, "He is in the details of my life".  And I know He loves me - Trishna.  Father can move mountains.

To add to my joy and continue fulfilling my prayers... someone full of charity and love donated $1,000.00 to my little guys' account!!  How did you know this was the moment?  The very best time to add this money to their account?  I broke when my mom told me this news.... and there was hope and gratitude overflowing in me.  I called Justin and in between sobs told him , "I'm so happy.  We are so blessed.  Heavenly Father loves our family."  Thank you for listening and being so generous...  Thank you for loving our family.

I'm so grateful for the powerful communication of love through prayer.  I know as I communicate with my Father and express my needs, He communicates with others to be His instruments and answer my prayers.  Through those answers I have felt and immense measure of love...  that renews me, strengthens me, and testifies that I am a child of God. 

Please continue to pray for us and our little ones.  We know He answers.