…and just like that – 4th grade!

The trip to 4th grade……

A few years ago, we had a long, tense and emotion filled Individualized Education Plan (IEP) meeting. It was long….very long! I read to the team something I had written titled “Peter at 25”, and challenged us all to determine what we needed to do to reach the goals of independence. We talked a lot about what Peter needed to be able to do as an adult, where he was today, and what we needed to do to get to our goals. There was a lot of passion at the table and maybe a few damp eyes. I know everyone sitting at the table is invested in Peter, we just don’t always agree on the how of our goals.

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First day of Kindergarten. August 15th, 2012

 

Sitting at the end of the table was a student teacher, her eyes wide opened. I feared I was making her reconsider her career choice. At the end of the meeting she came up to me, with tears in her eyes, to thank me for giving her the honor to sit through Peter’s IEP. She said that hearing my words touched and challenged her, that she had learned more in those hours than she had through school, and that she felt that experience had redefined who she wanted to be as a teacher and the responsibility towards children on IEP’s that she had not considered before. She thanked me profusely and left me with the words “Peter is so blessed to have you as his mother, and one day I hope I get to meet Peter, and maybe teach him”.

I left that meeting and called a friend who promised to pray for the meeting to go well, and wanted to hear all about it when we were done. I remember telling her that I felt a “God wink” because the student teacher’s name was Trinity. Despite the challenge of the meeting, it put into motion changes that were needed and as a team we worked better together after it.

Last Friday I visited Peter’s 4th grade class for the first time. His teacher walked up to me and said “Catherine, Peter’s mom, do you remember me from Peter’s IEP meeting a few years ago?” I was floored as the memories flooded over me. It was Trinity. Unknown by me, she had later got a job at the school and begged to be allowed to teach Peter. Goosebumps and tears moment. She followed up with, “I want to get together as soon as possible to talk about your dreams and goals for Peter, and plan on how to make them happen”.

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Peter and Trinity….kicking off a great school year! August 11th, 2017

As Peter ran around the school, with adults and kiddos excitedly greeting him and welcoming him back, I know in my heart that he continues to be in the best place for him. We are so blessed to have a great school with dedicated individuals who care for Peter, a school where peers of all ages know him and befriend him. Now, in Peter’s world school is all about riding the big bus, PE, and recess – playing football with the big boys!

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Riding the bus on the first day of 4th grade…..the bus came to the wrong side of the road – oops! August 14, 2017

And in the midst of the excitement of family vacations and jumping back into school, I failed to send out notice earlier about our annual Colorado Springs Down Syndrome Association’s Buddy Walk. Yes….that time of the year…..our Buddy Walk is this Saturday, August 19th. Below is a link to Team Peter Bear where you can join our team as a walker, a donor, or both; and access information for the event. We sure hope you can join us!

GO TEAM PETER BEAR!!

xoxo

catherine

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10 year heart-versary

 Today we visited the Mother Cabrini Shrine in Golden, Colorado. What stuck me most about this Saint was her start to life. Not a big bundle of joy and good health, instead she was frail and sickly. Miraculously, she was only one of four siblings, out of thirteen, who survived adolescence. She felt called to a holy life, yet was rejected from the order that had educated her in school because of her health. She was defined as disabled. Yet, this frail young girl had a heart for life and her calling. She went on to live to the age of 67, and in those years of life she founded an order of sisters that continues today. She opened orphanages, hospitals, and schools in various places around the world, many here in the United States. Sixty seven institutions were established by this “disabled” woman, institutions that would serve so many people over the years. Her perseverance over adversity, and her heart to serve those marginalized and less fortunate allowed her to overcome the limitations put on her by others.
 Ten years ago today, John and I spiked our young son’s hair green – the color of life, and one that said “notice me….see me, and not my disability”. We held him in our arms. Our hearts beating rapidly out of our chests. I will never forget the moment I handed him over to a kind looking nurse and watched her carry him through some doors and down a hallway till he was out of sight. Peter was going to have open heart surgery, and we prayed he would come back to us. At merely seven weeks and just barely 9lbs, he was heading off to have his chest sawed, clamped open, and his tiny heart repaired. The hope was that repairing his heart would improve his severe pulmonary hypertension. His cardiologist at the time described it as the worse case of pulmonary hypertension in a neonate that he was aware of, and the prognosis was not good. If we couldn’t get it under control, we would spend the next 12 months of our lives watching him die. A lot hinged on this surgery which within itself was nothing we thought we would go through with a child. We had spent most of those seven weeks in the NICU living and breathing by numbers and endless alarms going off at all hours. Peter struggled to eat, to breathe, to simply live. We were told his heart and lungs were working at the pace of running a marathon non-stop for seven weeks. He couldn’t consume enough calories to make up for what he was exerting, so we tube fed him every two hours to get him strong enough for surgery. The six to nine months we had, rapidly became 7 weeks as Peter worsened.
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Minutes before heart surgery – July 2nd, 2007

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A day after open heart surgery. July 2007

Fast forward to today, not ignoring all the other medical challenges Peter has had, and Mother Cabrini had to be looking down from heaven smiling at Peter. He climbed all 373 steps from the base of the shrine to the top where the large statue of Jesus overlooks the valley. At each landing Peter would say “almost there”, before realizing he still couldn’t see the top and adding, “oh, okay”, as he plodded on. The statue was the Sacred Heart of Jesus. So fitting. The devotion to the Sacred Heart of Jesus reflects on the long-suffering love and compassion of the heart of Christ towards humanity. Love and compassion towards all humanity. Love. Compassion.
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At the base of the Mother Cabrini Shrine…ready to climb 373 steps up, and then back down.

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Sacred Heart of Jesus, Mother Cabrini Shrine – Golden, Colorado.

 As we celebrate Peter’s 10 year heart-versary, reflecting on the life of Mother Cabrini shed a profound light on the moment. Not unlike her, Peter lives a life in which people often see his disability before they see him. Where people, consciously or not, place limitations on him – me included, failing to see his potential instead of his adversities. When I was pregnant with Peter, I was sure he would beat the odds. Surely if I believed enough, he would have less challenges and achieve more. My own simple ignorance to what was to come, and my innate need to measure success by a sense of productivity and achievement. Well, I was wrong. If there is a one in a million chance for a challenge, Peter is that one in a million. He struggles far more than even his peers with Down syndrome. If we measured his success by his productivity and societal achievements, well, we wouldn’t be doing so well. Yet, I argue, that the sickly part of his body that needed fixing is truly his greatest gift. Peter has HEART. He has a pure and infinite joy for life. He believes everyone is deserving of acknowledgement, a smile, and probably even a hug. Adversity may be a speed bump in the road of life, but it reminds us to appreciate the sweetness of all that comes with it – like kind or funny nurses that believe in you even when chemo makes you feel crummy.
 The simple reality for us is that Peter’s physical body is a complex bundle of frail organs wrapped in a stocky and sturdy little body. One day his lungs and heart will likely struggle to sustain his life given the damage they’ve incurred over the years. When that time is, is a time I choose to not guess. Whether his life is long or short, Peter’s perseverance over adversity and will to live his calling rivals Mother Cabrini. To wake up each and every day ready to love life, live with an unending curiosity and sense of adventure, an ability to see beauty in simplicity, to see the goodness in others, and always ready to hold a hand, give a hug or plant a big kiss on someone…..and that love and compassion has been towards all of the humanity that he has experienced. From the hurt sibling, the helpful friend, and the loving teacher, to the lonely stranger at the end of a church pew, the homeless family standing outside, or the barefoot man walking the streets. In a world that sees Peter’s disability and limits him, Peter sees no difference in those around him. As John often says, “Peter is an equal opportunity hugger”.
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Happy 10 year heart-versary, Peter bear!

 So as we celebrate 10 years from his life-saving surgery, I hope that we will all reflect on the power of our own hearts. May we be inspired by those considered disabled and with limited potential, and find our personal calling to live out a life that shows love and compassion to the humanity around us.
xoxo
catherine

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.

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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.

xoxo

Catherine

Ds Awareness Day#17: Everyone has a story

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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.

WELCOME TO HOLLAND

by
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.

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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.

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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#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.

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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.

Ds Awareness Day#12: Inclusion…beyond the classroom.

Ds Awareness Day#12: Inclusion – beyond just the classroom. 

What is “Inclusion”? 

“Inclusion is a philosophy of education based on the belief in every person’s inherent right to fully participate in society. Inclusion implies acceptance of differences. It makes room for the person who would otherwise be excluded from the educational experiences that are fundamental to every student’s development.

Inclusive education is more than mainstreaming. Mainstreaming implies that a student from a separate special education class visits the regular classroom for specific, usually non-academic, subjects. Inclusion is an educational process by which all students, including those with disabilities, are educated together for all, or at least most , of the school day.”

Why ‘beyond the classroom’? 

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Peter celebrating his birthday by sharing ice cream with his classmates. [May 2015]

As Peter’s mom, however, my belief is that true inclusion extends beyond the classroom. A few years back I wrote a blog post about Inclusion vs. Including after an emotional experience at McDonalds. In a nutshell, I feared (and still do) that just because Peter’s school was an inclusion setting, that did not mean Peter would be truly included by his peers.

Peter’s challenges go beyond the fact that he has Down syndrome. As a student he has spent several years in and out of the classroom due to illness, mainly during his years of chemotherapy. Kids notice that, and it can be uncomfortable to know someone is very sick. Peter is really short, I mean super short, like almost off the Down syndrome height chart version of short. Kids see him as younger because he is smaller. Peter can’t communicate verbally. The basis of all relationships is good communication. So, his inability to communicate verbally makes him more like a baby. Peter can spend all day in the same class as his 2nd grade peers, but they will see him as different. He is different. Inclusion requires acceptance of differences. 

So, stepping up onto my tiny soapbox, we lead by example on accepting differences. Differences of all kinds. No matter how well Peter’s school educates him with his peers, his peers will continue to learn acceptance by what they see around them every day in every setting. Therefore, it is important that we, as a society,  develop attitudes that permit people with Down syndrome, and other disabilities, to participate in community life, to be accepted in a manner that recognizes and preserves their value and human dignity. This doesn’t deny differences, but it promotes participation, belonging, and interaction. Inclusion, in the purest form, goes beyond the idea of physical location, but is rather a belief system that permeates all aspects of everyday life.

We must become an inclusive society, a society in which everyone belongs – not despite their differences, but embracing their uniqueness.

Leading into the holidays, Peter was the star student of the week. I helped put together the poster that would hang in his class, and came to school one day to help him deliver an “All About Me” speech with his class. When all the material came home, it included letters that were written to Peter by his classmates. Many referenced what Peter had delivered in his speech, mainly that he loves dogs. A lot of his classmates wanted him to know that they have dogs too. The mom tears came when I read the letters that thanked Peter for being a good friend, for including others on the playground. The letters that thanked him for always sharing a smile, or hugging friends when they needed it. At the core, they thanked Peter for being inclusion, by the way that he accepts his peers, promotes participation, shares a sense of belonging, and interacts – even without the use of words.

“When accorded their rights and treated with dignity, people with Down syndrome will, in turn, provide society with a most valuable humanizing influence.” – Dr. Sigfried Pueschel

 

Ds Awareness Day#11: Do they all look alike?

Ds Awareness Day #11: Why do all people with Down syndrome look alike? Actually, they do not all look a like. 

“Huh?”

There are typical physical characteristics of Down syndrome, such as up slanted almond shaped eyes, flat nasal bridge, white spots on the iris, short stature, and large gap between the big toe and other toes.

Individuals with Down syndrome may have many or few of the typical characteristics. As a result they do have similar aesthetics. 

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Three handsome young men with Down syndrome, they share some common (good looking) aesthetics, but all look more like their families than each other. [Buddy Walk 2014]

“I’m confused now…..alike or not alike?” 

So, this is science….brain science, not rocket science! Our human brain naturally looks for patterns and categorizes accordingly. As a result, even within society, we have categorized individuals with similar physical traits into groupings. This is not meant to be offensive in any manner, but will serve to explain. For people, with little exposure to an Asian community, they will see common characteristics among the people and categorize them simply as Asian. However, within the Asian community or even with people that are very familiar, they can easily identify individuals of Korean vs. Japanese vs. Chinese decent for example. The familiarity of these physical characteristics leads to refining of data, but still categorizing based on what we see and our brain processes.

With individuals with Down syndrome, the human brain sees the patterns and categorizes the individuals into a grouping based on this data. This is exactly what Dr. Langdon Down did when he noted the common characteristics and created a category in which to put them (see Ds Awareness Day#6). Since most people aren’t exposed to large numbers of individuals with disabilities for long enough to see their differences, the brain is simply seeing the common characteristics and grouping them.

In all actuality, individuals with Down syndrome inherit their looks from their families. While the extra 21st chromosome gives them aesthetic similarities with other individuals genetically enhanced the same way, their genetics still come from their parents.

As I mentioned before, we had a prenatal diagnosis with Peter. Being the chatty person that I am, I gave the full run down of all we knew about Peter to the on call OB/GYN handling my delivery, whom we had not met. Peter rushed into the world all big and chubby. She said, “If you hadn’t told me, I would not have guessed he had Down syndrome – he doesn’t look Downs.” To this day I don’t know exactly what the meaning was behind that comment.

I looked at him and I did see all the characteristics – almond shaped eyes with white spots in the iris, flat bridge on his nose, floppy ears, low muscle tone, short limbs, and a protruding tongue. Of course I saw all of that! But I also so the white hair that both John and I had as kids. I saw the clear blue eyes like my Aunt Lizzie, that now Gretchen has too. I saw the naughty twinkle in his eyes like Jack, but also the expression that said “Please snuggle me” that Tommy had. He had the same fuzzy head as Alexandra, and a calmness that Michael had as a baby. When I saw Peter I saw Down syndrome, but I also saw Krause and Mortimer in him.

Confession time! – I have about 50,000 photos on my computer. Most not in albums. Sad! Sometimes as I go through them, I have to check the outfit on the baby or the date of the photo to be sure I guessed right on who the photo was of. Yep, I thought all my babies were uniquely beautiful – never to be confused – but fact is that they all, Peter included, have many traits they share. I see that now.

So next time you see an individual with Down syndrome, pause and take a second look. I bet you will see they look far more like their family than that brain of your first processed.

 

 

Ds Awareness Day#10: What about the siblings?

We are pregnant with/just had with a child with Down syndrome, what about our other kids? 

The blue chip in life....

This is a common question among parents who find out they are having a child with Down syndrome. And for good reason. Most did not grow up with a sibling with a disability, therefore there is very little personal experience upon which to rely. If you are anything like me, in moments like that, the most convenient and private resource is Google.  Ack! Be warned! There are endless articles spanning the spectrum of information and opinions.

What John and I learned, the best resource is actually other families. So many families are willing to honestly share their experiences, and provide support in many ways. When pregnant with Peter, we already had 4 other kiddos at home, with the youngest being barely a year old. I talked to several moms on the phone, which gave me information I needed, but we still needed to prepare our family.

One family, large like ours, invited us over for dinner. The youngest child had Down syndrome. We had dinner, we sat around and chatted, the kids played until they were worn out. We talked about family, children, schools, and Down syndrome. As we quietly drove home in the dark, a voice from the back of the van said, “They are just like us”, followed by, “That was fun”, and lastly, “Why didn’t they have a kid with Down syndrome?”

In a single night of normal family life, our kids went to bed assured that their lives were not being turned upside down. The night was so normal, they confessed they didn’t notice Down syndrome. The conversations about having a brother with Down syndrome continued through the pregnancy, and continue today. It is important to take care of everyone’s emotional health (that includes yours too!), and allow for honest dialogue. The journey is not always easy, but talking about the good, the bad, and everything in-between is necessary.

Recently Dr. Skotko and Dr. Goldstein conducted hundreds of surveys with siblings to find out what their experience had been having a brother or sister with Down syndrome. Here’s what the siblings said:

  • 96% had affection towards their sibling with Down syndrome;
  • 94% were proud of their brother or sister with Down syndrome; and,
  • 88% felt they were better people because of their sibling with Down syndrome.

Experts within the Down syndrome community have also reported that “while having a sibling with Down syndrome may present unique challenges, it also provides many opportunities for children’s positive growth and character development. Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy.”

Click HERE for more tips and information from the National Down Syndrome Society.