the story of the happy turtle…

We’ve all heard the story of the turtle and the hare. The hare is very confident of winning, so it stops during the race and falls asleep. The turtle continues to move very slowly but without stopping and finally it wins the race. The moral lesson of the story is that you can be more successful by doing things slowly and steadily than by acting quickly and carelessly.


In the case of my happy turtle (aka Peter), it isn’t a race, it is just a way of life. Having, myself, lived life more like the hare, I have to keep learning from my little turtle. Lessons that are not always easy, but necessary.

My happy turtle is slow, even by turtle standards. Peter is taking the slow and joyful path through life. A path slower than most of his peers with Down syndrome. A path he enjoys. I don’t know a kid that can laugh and smile as much he does in a single day, let alone day after day. Peace and love my friends, peace and love!

But as happy turtle’s mom, learning the lessons is hard. While I am a task oriented with some degree of analytical thinking and enjoy the ability discuss complex topics, I have found that when it comes to Peter I am first mama bear, second caregiver. This means that when given information regarding Peter, I react first emotionally and then mentally. This has been true at every appointment, every school meeting, every therapist evaluation, every clinic visit, and so on. This week was no exception, and in the area that hurts the most. Speech.

Yes, most individuals with Down syndrome have some degree of speech delay and/or issues with intelligibility of speech. However, Peter’s speech issues are broader and deeper than most. A doctor once broke it down as 10% of kids with Down syndrome have speech disorder #1, and 10% of those have speech disorder #2, and then less than 10% of those have speech disorder #3, and so on. Peter tips the scales with at least 4 and maybe growing. Following the percentage logic, Peter truly is one in a million!

After three weeks of re-assessment, Peter demonstrates a motor planning disorder, a motor speech disorder, a phonological processing disorder, immature language skills, limited receptive language skills, and very limited expressive language skills. The test used was a pre-school test because his speech is so far behind that a chronological aged test would have been a waste of time. At nearly 9 years old, Peter actually “failed” pre-school language test, and falls in the 0-2 year old range for speech.

Cue a broken heart.

Here is where the mama bear vs. caregiver comes in. My caregiver mind already knew all of this, continues to work with therapists to best expand Peter’s speech opportunities, celebrates the successes, and focuses on potential. My mama mode reacts with a broken heart, and quiet tears alone in the safety of my van. Sometimes I transition rapidly from emotion to brain, but other times I need space and time to grieve. Space and time to grieve the loss, digest the situation again, and allow myself to face my own fears about what this means to Peter’s life.

Why does it hurt so much? Maybe too many younger years taking magazine quizzes with friends so that we could identify what bucket we fell into. Some crazy need to “know who we are” and to “find ourselves” is now coming back to bite me in the rear. Forget that, it is not biting me in the rear, it is stomping on my heart over and over again.

On one hand I want to know. I can’t live life on an “as need to know” basis. I want it all! Give me all the data, all the info, all the buckets. More the more better. Let me put the pieces together, create a big picture, and solution my way through the maze to a happy end. The project manager in me must find a solution.

My happy turtle is teaching me that I can’t brain my way through the hard parts. That sometimes all the pieces don’t come together to form a big picture. That sometimes there just isn’t a big picture, but a series of smaller pictures that may or may not tell the same story. He is teaching me, over and over again, that sometimes there just isn’t a solution. Sometimes all the quizzes put us into buckets we don’t like, our only choice is how we react to being in these buckets.

I don’t know that Peter has reached the cognitive level to understand that he is different and struggles in ways that those around him don’t, or if he has realized that and just doesn’t care because the good stuff is just way too good to be detracted from by the struggles. Either way, he choses to wake up every day and love his life, to love those around him, to embrace the excitement of life – even with the mundane daily tasks. How can one truly celebrate the school bus coming, every day, as if it were the first day it ever showed up? The bus has come every school day for three years…..yet the excitement is still there every morning. “Wo-hoooo! I get to ride the bus today!!” Every morning he turns to hug me goodbye and say “I la-la-la you” (Peter speak for “I love you”). And when my mama heart bursts with joy, my arms want to hug for just a bit longer, and my “I love you” back becomes “I love you too, I love you sooooo much! Oh my goodness Peter, I just love you soooooo much!!” Then I get it. At that moment I get a small glimpse of the beauty in which Peter sees life in every moment. It doesn’t matter that my head knows the bus will come again tomorrow, and I get to say goodbye again. My mama heart lives that moment as it if were the first and last time, and I want to hold on to that love and joy.

All this comes back to the words of wisdom from a nurse when Peter was a mere tiny little newborn with more tubes and monitors that I thought a tiny body could handle. As I lamented that in his few weeks of life Peter had already gone through so much, and it seemed so unfair, she responded with, “This isn’t hard on Peter, this is only hard on you, he knows no life different than the one he is living and he is happy.”

Some of us mamas of kiddos with special needs feel the pressure to be strong, pulled together, and emphasize the joy our kids bring us. Lest we be judged as unhappy, unable to handle it, or an example of why life is better without kids with special needs. The reality is that having a kiddo with special needs is in many ways no different than being a mama to a typical kid – there are ups and downs, joys and frustrations, mistakes and moments of grandeur. There is life. Simply put – there is life. Gloriously messy, and uniquely ours.

So yes, right now I grieve for what I believe Peter has lost – again. I face my darkest fears of what this might mean in his life. I let the tears fall. But when the bus comes back this afternoon, and he jumps off the top step and into my arms, I must let my heart be in that moment. That moment when he jumps at me like it is the first and last time he will do that, and with full confidence that I will catch him. That moment of joy at the sense of flying. That moment where he is simply happy to see me, will chase the bus up the road to the next mailbox, and then saunter back down to our driveway assured that all is well in this world. Why? Because sometimes getting to experience the same joys each day isn’t boring, it is reassuring that no matter the struggles, we know what joys await us tomorrow.



Ds Awareness Day#21: Awareness In Action

Happy World Down Syndrome Day 2016!

IMG_0581 (2)


The last 20 days we’ve covered various topics related to Down syndrome, building awareness. Now it is time to put awareness into action.

What is awareness in action? ACCEPTANCE! 


noun     ac·cept·ance/ əkˈseptəns/

Simple Definition

: the act of accepting something or someone
: the quality or state of being accepted or acceptable

On Maslow’s hierarchy of needs, the basic human needs, those needed for survival, are classified into two cateogories. First is the physiological needs – food, water, shelter. The second is safety needs – security and stability. Once these basic human needs are established, the next is the psychological needs of the human, identified as love and belonging. This is met through family, friendships, intimacy, and a sense of connection. Simply put, it is the need to be accepted.

Once the psychological need to be accepted is met, the individual is able to move to self-fulfillment through self-esteem and self-actualization. The top of the hierarchy being the sense of having achieved one’s full potential. Maslow’s hierarchy defines the need to be accepted as a necessary need before one can achieve their full potential.


Version 2

“I love me, and my life…..just the way it is!” 




Blessed by the love of someone special with 3 of the 21st chromosome! 

This is no different for individuals with Down syndrome, they have within them the human need to be accepted. 

We have talked about how acceptance implies the basic right to live, the opportunity to be included in education and community. We’ve talked about respect towards individuals of differing abilities, and giving them the opportunity to participate. Ultimately it is cherishing the dignity of all.

So what can you do?

Everyone is in a different spot along the journey of acceptance. If you are uncomfortable around individuals with disabilities, take that next step – simply smile and acknowledge them. Next, greet them or wish them a good day.

For someone who is comfortable around individuals with disabilities, what can you do next? Consider having a conversation – what greater way to include someone than to listen to their story. How about teaching? Do you have a skill or topic that you could give others with?  Consider volunteering or teaching a class. Ready to go beyond that? Considering hiring someone with disabilities, and give them an opportunity to earn an income necessary for independence.

We are all in different places, gifted differently, but with the one common calling – the calling to accept and respect the dignity of all individuals.

I hope that through these last three weeks you have learned more about Down syndrome, and are ready to take your awareness to the next level, put it in action, and help members of our community become accepted.



p.s. Don’t forget to share or comment on these posts to be entered into our Ds Awareness drawing for one of three prize baskets. Drawing will be done on March 22nd, and I will contact the winners for mailing/drop off address. Good luck!

Ds Awareness Day#20: What I wish I would have known ….

As I considered how to start wrapping up our 21 days of Down syndrome awareness, I asked a few people what they wish I would have covered or shared. Not putting anyone on the spot, but they had no answer – hmm.   So I switched the question around, what do I wish I would have known about Down syndrome before Peter rushed into the world?

I wish I would have known….

  • just how many people were willing to support us in so many different ways, instead of feeling so alone with a diagnosis
  • people with Down syndrome, and just how unique they each are
  • what it meant to be a “good advocate” for your child
  • how much joy I would feel
  • how normal life would be, most days
  • that some days would be hard, but ultimately we would be OK
  • we would cherish and celebrate each milestone so much more, getting there slowly makes the moment so much sweeter
  • how utterly amazing it would feel to have Peter’s little arms around my neck and feel the warmth on my ear when he finally learned to whisper “I love you!”



“hmmm…what should I teach mama today?”

I also wish I would have known….

  • no one really expected me to be a super-mom
  • I would learn how to be strong, when being strong was the only choice I had
  • that I was capable of learning (and doing) so much medical “stuff” when it meant keeping Peter alive
  • how to lean on others
  • that I was enough….

Every child, every mother, every family is different. For more thoughts on what parents wish they would have known, I invite you to read these quotes from other parents at NDSC Center.

One day it may be you, one day you may be the person someone turns to when they have a diagnosis of Down syndrome in their family. I hope that what you’ve read over the last several weeks will help you in that moment. For many the journey is unexpected, remember that it is also packed with so much more joy and love!





Ds Awareness Day#19: Dear Future Mom…

Here we are, just two days away from 3/21: World Down Syndrome Day! As I wrap up our 21-day series of Down syndrome awareness, I want to loop back to almost where we started – the news that a baby is going to be born and, unexpectedly, be born with Down syndrome.

On Ds Awareness Day#6 I wrote about Dr. Down, for whom Down syndrome is named. I also wrote on Ds Awareness Day#1 about the Down syndrome being a triplication of the 21st chromosome. Dr. Down didn’t discover this, it was actually the finding of Dr. Jerome LeJeune. He was a French pediatrician and geneticist, who discovered the chromosomal cause for Down syndrome in 1958.

Dr. Lejeune spent most of his life dedicated to his research and learning, but he also showed a passion for helping children with Down syndrome, to whom he showed an unconditional love. Dr. Lejeune showed that through both learning and loving, “one can see the beauty of creation.” He advocated strongly against the use of prenatal testing and the abortion of unborn children who were found to have Down syndrome. 

It is my personal belief that no woman woke up one day and said, “I hope I become pregnant with a child with Down syndrome so that I can then have an abortion.” The choice to terminate a pregnancy is not one taken lightly, especially in the situation of an unborn child with medical diagnosis. Nor is it without long term effect for the mother and family. Sadly, the abortion rate for unborn children with Down syndrome is staggeringly high. This is largely due to fear. Fear of the unknown, fear of an extraordinary burden, fear based on the outdated and unsupportive information often shared at the time of a prenatal diagnosis.


A baby with Down syndrome is often a surprise, a beautiful surprise that can bring much joy to the family. Here is Peter loving on his Granny! [January 2009]

John and I had a prenatal diagnosis, and the assumption by many is that we would or should terminate the pregnancy. We were blessed with the support and encouragement by families in our community with children with Down syndrome, who shared their honest experience. In the years since we started our journey, the below video was published by World Down Syndrome Day organization. Grab a tissue and be prepared to be inspired!


Dear Future Mom,  CONGRATULATIONS, you are having a baby! 




Ds Awareness Day#18: Myth Busters, Down Syndrome Edition



Myth Busters: Down Syndrome Edition

Myth: Down syndrome is a rare disorder. 
Truth: Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome, or around 6,000 births per year. Today, there approximately 400,000 people with Down syndrome living in the United States.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth:  In almost every community of the United States there are parent support groups and other community organizations directly involved in providing support and services to families of individuals with Down syndrome.

Myth: Having a sibling with Down syndrome will be a hardship for siblings.
Truth: Most families report that their “typical” kids are more compassionate, patient, and tolerant of all people because of their experience of having a sibling with Down syndrome. The sibling relationship is generally a typical one – full of love, occasional arguments, and just being together.

Myth: Individuals with Down syndrome are always happy.
Truth: Individuals with Down syndrome have feelings just like everyone else in the population. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior.

Myth: Individuals with Down syndrome are stubborn. 
Truth: An individual with Down syndrome may not be able to tell you how they feel or may be unable to readily change mental gears when offered new information or direction. This can lead to the false perception that they are being “stubborn.” Behavior is communication – individuals with Down syndrome typically face challenges with both receptive and expressive language. By implementing strategies to increase communication, this perceived behavior can be greatly reduced.

Myth: Individuals with Down syndrome have severe cognitive delays.
Standard IQ tests do not measure many important areas of intelligence, and you will often be surprised by the memory, insight, creativity, and cleverness of many with Down syndrome. The high rates of learning disabilities in students with Down syndrome often mask a range of abilities and talents. Clearly, educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Individuals with Down syndrome are always sick. 
Truth: Though individuals with Down syndrome are at an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, and thyroid conditions, advances in health care and treatment of these conditions have allowed for most individuals with Down syndrome to lead healthy lives.

Myth: Individuals with Down syndrome cannot be active members of their community. 
Truth: Individuals with Down syndrome are active participants in educational, social and recreational activities. They are included in the typical education system and take part in sports, music, art programs and any other activities in the community. Individuals with Down syndrome are valued members of their families and communities, and make meaningful contributions to society.

Myth: Segregated special education programs are the only option for students with Down syndrome. 
Truth: Students with Down syndrome are included in typical academic classrooms in schools across the country. The current trend in education is for full inclusion in social and educational settings. Sometimes students with Down syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down syndrome graduate from high school with diplomas, and participate in postsecondary academic and college programs.

Myth: Children with Down syndrome will never grow up to be independent. 
Truth: There are now many more opportunities for individuals with Down syndrome to participate in aspects of community life: education, recreation, employment, social, and family life. As the move towards community integration continues, we see more supports and services being developed that allow adults with Down syndrome to live on their own, with friends or on college campuses. Some individuals are even buying their own homes with their own money!

Myth: Adults with Down syndrome are just like children. 
Truth: Adults with Down syndrome are not children, and should not be considered children.  They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers.

Myth: Adults with Down syndrome are unemployable. 
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices, by banks, corporations, nursing homes, hotels, and restaurants. They work in the music and entertainment industry, in clerical positions, and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability, and dedication.

Myth: Adults with Down syndrome are unable to form meaningful relationships. 
People with Down syndrome want the same things out of life as we do. They want friendships and opportunities to date and socialize. They want to form on-going relationships with other individuals with disabilities, as well as those without. Some get married and enjoy a rich family life, while some stay single and enjoy activities with friends.

To read about more Myths vs. Truths visit the National Down Syndrome Society.



Ds Awareness Day#17: Everyone has a story


Ds Awareness Day#17: Everyone has a story…..

Today I am going to veer off course a tad from the awareness posts you’ve been reading. So far I’ve been posting snippets about Down syndrome in general, and sharing tidbits about Peter. Today I simply want to share that everyone has a story….and, no two stories are the same. 

The story of one family touched by Down syndrome will be very different from the story of another. As hard as it may be sometimes, we must not compare or judge. In many cases the journey the families are on is an unexpected journey, but one filled with moments never before dreamed of. The following poem is often shared in the special needs communities, and one that captures simply and beautifully the experience that many have when they find their life detoured from what they planned and onto a whole new path.


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

We are all on our own personal path through life. Some may look alike, and some may differ significantly. We need to be sure to not judge or minimize the journey of others. Nor must we compare or doubt our own journey. But, we can share. There is beauty in the story telling of journeys, the sharing of stories, the learning together from each other.

So, next time you meet someone with Down syndrome, I invite you to hear their story.  And to help you get started I invite you to check out the DownSyndrome.Love channel on YouTube. John and I were interviewed last year, and the interview was recently posted. There are also other families sharing their stories, and I think you’ll see how different our kids can be, but how alike is our description of the joy they have brought to our lives.


Ds Awareness Day#16: Independence

Down syndrome Awareness Day#16: Independence. 

The road to independence is not for the faint of heart. With any child, this process is done in small, incremental steps throughout childhood. Although different communities and groups have different styles as to how this process is completed, everyone gradually trusts children with increasing responsibilities and independence knowing and accepting that they will make mistakes but allowing them gradual freedoms in order for them to learn and “test the waters.” By the time these children are young adults, they are fairly competent. They can go away to college, go out into the community to shop and socialize without adult supervision. In other words, they gradually join the adult community through this long series of years of little steps toward independence.

Individuals with Down syndrome need the chance to take those incremental steps toward independence. 

Typically developing children make tons of mistakes. No one stops their forward progress over these mistakes. Children with Down syndrome must also have a right to continue to be pushed forward despite errors toward that coveted goal of independence.

How? Start the journey and move along systematically!

  1. Preschool age – children start to develop self-help skills such as walking, being able to partly dress, able to feed themselves with a spoon and fork and are potty training.
  2. Elementary school age – developing and refining skills that they have begun to master in the preschool years, such as becoming less messy at eating and drinking, improving their fine and gross motor co-ordination in writing, managing fastenings, hopping, jumping and becoming able to manage all toileting steps without any assistance.
  3. Teenage years – parents need to encourage further independence, continue to move away from doing things for their child because it is easier or quicker, teach more complex self-help skills.
  4. Adult years – Most young adults with Down syndrome canned should take care of their laundry and their domestic cleaning, they can make simple meals, they can take care of their personal hygiene, and they can take care of their own money in bank and savings accounts, with minimal support. It is often at this stage that young people become more independent in travelling in their communities, using buses and taxis.

Achieving the steps above requires a lot of effort, persistence, risk-taking, and learning from mistakes. I think the hardest part, as a parent, may be letting go and giving the space for the learning process to take place. Individuals with Down syndrome, like their typical peers, need to be allowed to make mistakes, and learn from mistakes. They need to be given the chance to take those incremental steps toward independence.

For more ideas check out DSE Online’s article on Social Development.


Life skills…..mastering grocery shopping. He did it all, including swiping my card, with very little guidance…..and when all done threw his arms up in the airs and triumphantly shouted “I DID IT!”. During the summer I took him weekly to do a short trip with a list of four items. Practice, practice, practice!

Peter’s Story – 

Independence is our goal for Peter. How far he makes it is yet to be seen. Even the small steps listed above can be challenging. All of us that interact with Peter in some way have those moments were doing it for him is far easier and quicker than teaching him how to do it, and allowing for mistake after mistake, before he might master a skill. This is something all of us that spend time with him at home and at school need to consciously work on each and every day. We have a way to go, but we are working on it!

Peter adds a few complexities to the mix.

  • He is a runner. Meaning “the world is my playground and I must discover it all, now!” He has no fear of the outside, so will just take off to explore his curiosity, without asking for help or company.
  • He likes people to be happy around him, meaning “Gosh darn it, doing all those self-help skills slowly or making mistakes frustrates you. I don’t want you to be frustrated. I see how happy you are to do them for me……so I will let you keep doing it!”
  • While Peter inherited his super extroverted skills from John, he inherited my complete and utter lack of coordination. Throw on what we think is some mild nerve damage from chemotherapy, and even skills that come to others with Down syndrome are taking him longer.

Our journey is not a smooth road towards independence. We, the adults that care for Peter, make more mistakes than he does at this point. But we keep working on it. We keep challenging each other to presume competence, and challenge Peter safely. There are have been some uncomfortable conversations with folks that gave up on Peter. We need to keep each other and Peter accountable for moving forward with this journey for a long and far as this path goes.

Peter needs to be surrounded by those who believe in his potential, and not judge him by his failures. 


Ds Awareness Day#15: Down syndrome and friendships

Down Syndrome Awareness Day#15: Down syndrome and friendships. 

Peer relations are a critical aspect of any child’s life.

Friends play a significant role in mental and physical health; however, developing friendships remains a problem for many with Down syndrome and other developmental disabilities. Many parents report that peer friendships do not extend beyond school hours.

Social inclusion is a critical issue for every student with a disability, regardless of whether the student is educated entirely in special education classes or is fully or partially included in general education classes. Hopefully, students educated in all of these scenerios will eventually live and work in the community, where they need to be able to interact with people of all ability levels.

In order for individuals with developmental disabilities to live independent and full lives, friends in the community are critical. The possibility of community friendships has been a major impetus for the full inclusion of individuals with severe disabilities in local public schools. However, according to Myra Madnick, the former Executive Director of the National Down Syndrome Society in New York, “Despite all of the gains individuals with Down syndrome have made, loneliness is a major problem”. Although students who are included have made great strides in language, behaviour, social development and academics this is not true for social inclusion

For more information click HERE from National Down Syndrome Society.


Peter and his best buddy. These boys are special because they accept and cherish each other just for who they are! We all need a friend like that!!

Peter’s Story –

Peter often sees adults as friends because of the familiarity and ease with which they interact with him. Tack on the amount of time he spent around adults due to all his hospital stays, medical visits, and therapies; and it is obvious why Peter is most comfortable around them.

Despite the challenges to develop healthy relationships, Peter goes out every day in “friend mode”. No one is a stranger, and everyone deserves a big smile. And in some cases, an extra big hug. He gets his extroverted ‘know-no-stranger’ personality from John. And, because Peter is friendly with just about everyone, he often misses the social cue that they aren’t really friends with him. He has not grasped that friendly does not equal friend.

Making true friends with other children has been harder for Peter both in and out of school. He struggles with communication and has little interest in most games/toys that are hits with kids his age. Some parents are uncomfortable with Peter, leading them to create a distance between Peter and their children. Often kids are uncomfortable with Peter’s differences, and unless guided by a parent/adult in accepting the differences, will generally create a distance too.

On the other end of the spectrum are kids that mock Peter’s differences, this happens most often outside of school where there is less supervision. While it breaks my heart, Peter doesn’t recognize that he is being humiliated and will continue to attempt to interact with those kids. Most often, his peers see Peter as much younger, almost baby like, and attempt to parent him. Peter will generally go along with this, as it involves interaction which he cherishes dearly.

Developing healthy relationships is a team effort, and one that requires work every day.

At school Peter has girl friends who are the nurturers, always wanting to be sure he is ok. He has the boy friends who have his back make sure he is in the right place at the right time, and staying out of trouble. He has those adult friends who just really love him, and care for his overall well being. His best buddy is a boy, with intellectual disability, who thinks Peter ROCKS. He accepts Peter for who he is, and sees him as an equal. This is Peter’s true best friend.

I think there is not one person at Peter’s school who does not know him. The most common phrase I hear in the halls of his school are “Hey, Peter!” Walking the hallways, learning in class, or playing at recess, Peter is happy at school because he feels accepted.

Acceptance is that first step in forming healthy and respectful friendships. 

Ds Awareness Day#14: Down syndrome & Marriage…I do!

Ds Awareness Day#14: Down syndrome & Marriage…..I do! 

There are many myths about individuals with Down syndrome, among them that an adult with Down syndrome is the same as a child, and that they are unable to form close interpersonal relationships that could even lead to marriage.

The fact is individuals with Down syndrome do socialize, and seek to have meaningful friendships.

As they grow they may choose to date, maintain ongoing relations, and even consider marriage. Adults with Down syndrome are not children, and should not be considered or treated like children. Like other adults, they enjoy activities and companionship of other adults.


Monica & David – the documentary of their relationship and marriage was winner of many film festival awards.

In the past, because of the inaccurate belief that individuals with Down syndrome stayed in permanent childhood, sexuality was not considered an issue. In fact, all people with Down syndrome have sexual feelings and intimacy needs. It is important that expression of these feelings in socially acceptable, age appropriate ways be recognized by families and caregivers. Sexuality education is the way to plan for this aspect of adulthood as it applies to independence in educational, social, residential and vocational settings

Like all human beings, individuals with Down syndrome have a need for love, affection, and acceptance. 

There are many stories that you can read regarding adults with Down syndrome defying societal misconceptions, and leading beautiful lives with meaningful relationships. I encourage you to check them out. You can start HERE with the story of Monica & David.

Peter’s Story – While we are many years away from dating and marriage with Peter, we still see in him the desire to have friendships and form relationships with others. Due to his personal journey, Peter often sees adults as his friends. Adults generally know how to interact with Peter, which gives him a sense of acceptance which is reinforced by interaction. He is far more comfortable around adults that most children his age. Making friends his age has been a little harder for him, and something he works on every day. (More to come in upcoming awareness post!)



Ds Awareness Day#13: Development, Early Intervention, and Therapy.

Ds Awareness Day#13: Development, Early Intervention, and Therapy. 

The first years of life are a critical time in any 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, and these abilities are attained according to predictable developmental patterns.

Development is a continuous process that begins at conception and proceeds stage by stage in an orderly sequence. Most children are expected to achieve each milestone at a designated time, also referred to as a “key age,” which can be calculated in terms of weeks, months or years. 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.

Children with Down syndrome will achieve all of the same milestones as other children, just on their own timetable. 

The most common therapies through Early Intervention are:

Physical Therapy – children with Down syndrome generally have low muscle tone, and benefit from physical therapy as it focuses on gross motor skill development.

Occupational Therapy – children with Down syndrome generally need additional support to develop and master skills for independence. Occupational therapy can help with abilities, generally fine motor skills, such as opening and closing things, picking up and releasing toys of various sizes and shapes, stacking and building, manipulating knobs and buttons, experimenting with crayons etc.

Speech and Language Therapy – though children with Down syndrome may not say their first words until 2 or 3 years of age, there are many pre-speech and pre-language skills that they must aquire before they can learn to form words.


When the weather is good, Peter LOVES playing outside ….practicing all those skills learned in therapy!

Peter’s Story:  Peter has benefited from all of the above therapies since birth, in addition to Music Therapy (until age 3), and now therapeutic riding. The wonderful therapists that have worked with Peter have become part of our family. Many of them with Peter since his first year, meaning they have been a part of our family watching all our kids grow up. Peter now receives therapy at school too, although the time allocation is minimal, so we continue private therapy.

As a parent, keeping up with therapy and all the other appointments that normally come with our kiddos, can be easily become overwhelming. The pressure to “practice” everything between sessions can become stressful too. I know I had anxiety that if I didn’t work enough with Peter, that I would be limiting his potential. I feared that I would look back one day and realize I was the reason he couldn’t do something. But on the flip side, I didn’t want to treat Peter like a science experiment with constant pushing of tasks.

Peter benefits from free play – to be an ordinary kid. Something about climbing the ladder and stopping himself at the end of the slide looks a lot like Physical Therapy. The endless hours he could spend stacking blocks and playing with his toy cars/trains looks a lot like Occupational Therapy. Singing to “Frozen” with Gretchen works on that Speech Therapy. Sometimes Peter wants to play with his siblings, and other times he rather just play alone. Gotta love that independent play!

Play is essential to development because it contributes to the cognitive, physical, social, and emotional well-being of children and youth.