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.

 

Ds Awareness Day#9: They are always happy….Not!

 

Are individuals with Down syndrome always happy? Ummm, no, not really! 

Individuals with Down syndrome have feelings just like anyone else. They experience the full range of emotions. They respond to positive expressions of friendship, and are hurt and upset by inconsiderate behavior.

Since Peter rushed into the world, I have had the chance to meet or observe individuals with Down syndrome of all ages. They are not all happy and outgoing. There is one young man at the grocery store that I have yet been able to get to smile. He honestly gives me a look that says, “Lady, if you don’t stop looking at me with that too-friendly smile, I’m calling 911!”

On one hand I have seen the individuals that are shy and reserved, very quiet and avoid eye contact. On the other hand the very friendly, the “let me give you a hug to relieve any stress and ask you about your day” type. And then many that fall somewhere in the middle. This same personality mix exists in all age and socio-economic categories.

Although, as a Ds community, we stress that individuals with Down syndrome are more alike than different, my Mama heart also believes in a magical quality that many hold in their hearts. The best party EVER, was a dance party at a Down syndrome conference I attended. There was not one square inch of dance floor free. The dancing, joy, laughter, hugging, celebrating was contagious….but almost more so was the love of others.

And that is what I think the extra 21st chromosome holds – the super power of love and kindness towards others. This genetic super material gives their owners super-vision. Not the 20/20 vision, but rather the vision to see the world through the lens of simplicity and beauty, that makes focusing on what really matters so much more obvious. We all need some of that super power!

Individuals with Down syndrome have a genuineness about them that they retain. So no matter what emotion they are demonstrating, it is a genuine feeling. They also exhibit an almost unnatural concern for those around them. A genuine interest, appreciation, and kindness towards others.

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Peter….measuring life’s success one hug at a time!

Peter’s Story:

Peter’s extra chromosome runs in overdrive most of the time, but let me tell you, as he gets older it doesn’t kick into gear first thing in the morning unless you let him quietly rejoin the world at his own speed. If Peter needs to be woken up for school, that extra chromosome of magic doesn’t wake up at the same pace. Zombie boy will say “NO!” and only “NO!” as he stumbles around for a few minutes, avoiding anyone in his path. Then BANG, that super-power kicks in and all of a sudden big smile, excited “Mama!” followed by a hug that says, “I missed you while I slept and I am never letting you go”. Except, he does let go because everyone in the family gets the same lets-get-this-day-started treatment. When he spots the bus, it is the same excited reaction every morning. When the bus driver welcomes him, his excited reaction is one that never takes any one moment for granted. He genuinely and excitedly cherishes every interaction as if it were the only time…..even thought it happens every day. His nature is to welcome the world with a smile. Every single day.

I know that Peter is behind his typical peers, and shucks, he is behind most of his peers with Down syndrome in many ways. Sometimes it hurts to see how hard things are for him to do. Actually, a lot of the time it hurts because it seems so horribly unfair that someone who gives so much should struggle so hard. A wise nurse once told me, “This isn’t hard for Peter, it is only hard for you. Peter knows no life different than the one he is living, and he loves it.” She is right. Peter measures success by getting you to interact with him, and him getting you to smile. Throw in a hug, and the deal is sealed, you just had a stellar experience together. As that extra chromosome shuts down at night, I know Peter celebrates the success of each day by the joy he brought others. Peter gives so much, and the rest of us struggle to keep up. Living in joy isn’t hard for Peter, it is only hard for most of us.

 

 

Ds Awareness Day#8: Health and Medical Issues

Are individuals with Down syndrome always sick?  No! 

Some health problems are more common among people with Down syndrome than among the general population. However, given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed. Here are some of the more common health problems:

Infections: Respiratory infections are more common among individuals with Down syndrome, especially during the first five years of life. There is evidence that individuals with Down syndrome have this increased susceptibility to infection because their immune systems have some abnormalities, though the mechanisms involved remain unclear.

Heart Defects: Heart defects occur in around 47% of individuals with Down syndrome and 10 to 15% of babies with Down syndrome have a severe heart defect that requires surgical intervention during the first few months of life. The ability to repair major heart defects has had a major impact on infant survival for children with Down syndrome in countries with appropriate facilities and expertise. [Peter was born with a cardiac condition, and underwent open heart surgery at 7 weeks.]

Leukemia: Children with Down syndrome have a 10 to 20 fold increased risk of developing leukemia The cumulative risk for leukemia by the age of 5 years is around 2%. Many children with Down syndrome and acute leukemia can be successfully treated with appropriate treatment. [Peter was diagnosed at age 3 with leukemia. He is post treatment, and considered ‘in remission’. We look forward to the day we can say CANCER FREE!]

Thyroid: Thyroid disorders are more prevalent among individuals with Down syndrome.  Once diagnosed, hypothyroidism can be simply and effectively treated, though this treatment and further monitoring is required throughout the individual’s life. [Peter went from borderline hyperthyroidism to definite hypothyroidism over a few years, and is now in treatment that he will continue through his life.]

Hearing: Up to 80% of children with Down syndrome experience hearing loss, sometimes severe. Even mild hearing loss will lead to difficulties in speech and language development. A variety of interventions are now available to treat or ameliorate the effects of hearing loss. Where children are having difficulty earning to talk because of hearing loss, signing may also help. [In addition to selective hearing, Peter does have hearing difficulties in certain sound ranges. While still considered “functional”, we continue to monitor his hearing closely so that we can implement treatment should his hearing deteriorate.]

Vision: Individuals with Down syndrome are more likely to experience vision disorders such as short sightedness, long sightedness and astigmatism. They are also more likely to have squints and to experience delays in developing effective focusing, depth perception and sharpness of vision. Many of these problems can be corrected to give good vision with the use of corrective lenses. [Peter wears glasses, which assist with day to day functioning. He still struggles with interpreting some of what he sees, which impact his learning and mobility. For example, Peter interprets change in flooring color as a distance change, and will try to step up or down when there is no change in surface levels.]

Sleep Disorders: Studies have reported a high incidence of sleep disturbance among children and adolescents with Down syndrome. [Peter has mild to moderate sleep apnea, which contributes to his Pulmonary Hypertension and the need to continue oxygen therapy when sleeping.]

Virtually all of the health issues that occur in people with Down syndrome also occur throughout the wider population. Therefore, general advances in medical care for all children and adults have also benefited those with Down syndrome. General medical advances and equal access to them are the main reasons for the increased life expectancy observed for people with Down syndrome in developed countries.

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Peter has been on the “frequent flyer” program at the hospital, and has been known to unhook his monitors and make a run for it – IV drip and all!

Peter’s Story: When he turns 18 years old, Peter is buying a lotto ticket. It will be a winning lotto ticket! How do I know this? While most individuals with Down syndrome lead healthy lives, many will have one or more of the common conditions for which there is a predisposition. So far Peter has them all, and more! How is that for the winning numbers?!

If you would like to know more about the conditions above, any I didn’t list, or specifically what Peter struggled with – comment below and I will reach out to you directly.  John and I are always happy to answer those questions that we can, and be support to families that may be going through something we have already journeyed with Peter.

 

Ds Awareness Day#7: Types of Down syndrome

I often get asked what type of Down syndrome Peter has, but the question is really asking about his “function” level. Is he “high functioning” or “low functioning”?

Down syndrome is NOT a spectrum on which individuals having varying degrees of Down syndrome that then fall into “functioning” levels.

As with all people, individuals with Down syndrome have different strengths and weakness, which influence their ability to succeed in different areas. In addition, individuals may have other conditions that influence their ability in different environments. While some disorders occur more frequently in individuals with Down syndrome, they are not limited to these individuals.

For example, Peter has various conditions, including “Speech Apraxia”, that have limited his ability to communicate verbally. Most children his age, with Down syndrome, are able to more clearly articulate and string words together than he can now. Peter receives Speech Therapy to help him continue to develop communication. Keep following our Ds Awareness posts to learn about different therapies.

So, are there “types” of Down syndrome? 

Yes, there are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.

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There are three types of Down syndrome.

Standard Trisomy 21/Nondisjunction is when the extra chromosome 21 in every cell. An estimated 95% of all Down syndrome cases is Standard Trisomy 21.

Translocation is caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs in an estimated 3% of cases of Down syndrome.

Mosaicism is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because: a) The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. b) The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaicism occurs in an estimated 2% of cases of Down syndrome. A person with Mosaic Down syndrome may exhibit all, some, or none of the characteristics of Down syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located.

 

Ds Awareness Day#6: Why is it called Down syndrome?

For many who know individuals with Down syndrome, the name just doesn’t make sense. Down? Really?!

The label “Down syndrome” is not meant to describe those with the condition as being “down”. As with many medical conditions, it is named after a physician who described the condition.

In the 1860’s, Dr. John Langdon Down published a paper describing a certain subset of his patients at the Royal Earlswood Asylum for Idiots (as it was called at that time). In that era when Charles Darwin and the theory of evolution were new, Dr. Down theorized that these patients were a “regression” in the evolution of man. Their physical appearance reminded Dr. Down of people from Mongolia, so he termed the condition “Mongolian idiocy.” The condition was known by this name, or shortened to referring to the individuals with the condition as “Mongoloids” or “Mongols”.

In 1961, the medical journal Lancet ran a letter from noted geneticists calling for a re-naming of the condition. The editor selected “Down’s syndrome” and the World Health Organization (WHO) confirmed that description for the condition in 1965. And, that is how “Mongolian idiocy” became known as “Down’s syndrome”, and now commonly referred to as “Down syndrome” (losing the ‘s, since Dr. Down didn’t have the syndrome).

Interestingly, Dr. Down passed in 1896, never meeting his grandson and namesake. The younger John Langdon Down, was born in 1905 with Down syndrome, and grew to be a much loved member of the family. He died in the ancestral home at age 65.

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John Langdon Down, born in 1905, was the grandson of Dr. John Langdon Down whom first described the medical condition. So handsome!

Ds Awareness Day#5: High school, really?

High School, really? Yes, again! 

Today, most individuals with Down syndrome graduate from High School. Many then go on to complete a transition to work program. Others will continue their education by attending community college or a four year college.

Be prepared to be surprised! 

Some individuals with Down syndrome attend graduate school!

Like all people, individuals with Down syndrome learn and develop at their own rate and in their own way. People with Down syndrome have varied goals for their futures and individual expectations of their roles in the family, school and community.

Skeptical?

Think about all the kids you have met over the year that enjoy to play sports. Let’s pick basketball for example. Many kids love to play. Some will keep it as a way of hanging out with their friends, others may play in high school. Others will work hard at their skills and use basketball as a way to get a college education. A few of those kids, who started playing young, will actually make it to the NBA. Their talents, skills, dreams, and goals for their future varied. It is the same for individuals with Down syndrome.

While some continue their education, others find meaningful ways to contribute in their community. Others lead more public lives, like our NBA stars. I’ve been blessed over the years to listen to some of them speak, or read some incredible testimonies.

To be inspired to see the potential of individuals with Down syndrome in a completely different light, I invite you to check out just a few of their stories.

Karen Gaffney – Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And two years ago, she accomplished her biggest swimming Challenge yet…she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else. Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed.

Tim Harris – In his teen years, Tim began to dream of owning his own restaurant. In October of 2010, the next chapter began and with the help of his family, Tim’s dream of owning his own business came true. Tim’s Place opened its doors in Albuquerque, New Mexico as one of the first and only restaurants to be owned by a man with Down syndrome. Tim recently closed his restaurant in Albuquerque and is relocating to the Denver area to be near Tiffany, the “love of his life”.

Angela Bachiller – In 2013, Angela became Spain’s first city councillor with Down Syndrome. As well as attending council meetings, Angela will be the Popular Party’s representative on Valladolid City Hall’s Disabled Persons Council. She aims to campaign to defend the rights of disabled people, saying she believes that people with disabilities need to play a more active role in politics.

This day Kindergarten, one day High School....and then, who knows!

Today Kindergarten, one day High School…..then, who knows!?!  [ June 2014]

Ds Awareness Day#4: Can Individuals with Ds Learn?

Short answer: Yes! Yes! Yes! Yes! 

All individuals with Down syndrome experience some degree of cognitive delays, from mild to moderate. Each individual is different, as are all students, therefore their strengths and weaknesses, talents and interests, will also vary.

The most important influence on early development, for all children, is daily interaction and activities within the family. Socially appropriate behavior should be encouraged and expected right from the beginning. Children with Down syndrome benefit from boundary setting in the same way as other children.

Parenting a child with Down syndrome will, in many ways, not be any different from parenting any other child. 

The formal education for children with Down syndrome begins almost from birth. The learning journey often begins with Early Intervention programs that include physical, occupational and speech therapy. These support the development of some of the most important early childhood skills.

What about school?

In the past, many children with Down syndrome attended separate schools or separate programs that focused only on students with intellectual disabilities. Research shows that the majority of children with Down syndrome make the best progress when they are educated alongside their typical learning peers.

Individuals with Down syndrome generally take longer to learn new things. New skills may need to be broken down into smaller steps than for other learners, and more repetition may be needed to retain learned skills. Children with Down syndrome may require more structure in their activities so that they can work independently in class.

A student with Down syndrome is more likely to experience success in a school where inclusion is embraced and supported as part of the school culture, and where the different learning needs of all the students are acknowledged and properly addressed.

The whole school benefits from including students with physical and intellectual disabilities as part of the school community. 

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Teaching Peter is a group activity! Everyone in the family takes turns working on reading, writing, math and spelling words. Peter benefits from reinforcement of the same information from different people. Here Michael is helping Peter with his math homework.

Peter’s Story:

Peter missed much school in the early years due to his illnesses. He has struggled with learning academic basics, but also shows us that learning is something we do each and every day. Peter participates in all school subjects with his 2nd grade peers, and also has dedicated one-on-one and small group learning opportunities to help solidify his academic foundation. While he struggles with academics, he excels at those magical “soft skills”. Peter is energetic and resilient, has phenomenal coping skills, and has learned how to function in his class and the broader school community. Peter is an extrovert, and likely knows everyone in school! He is well loved by students and staff. He LOVES school!

 

 

DS Awareness Day#3: a baby is born…with Down syndrome….oh

Your friend, sister, neighbor, acquaintance just had a baby! YAY! How exciting!

Oh…..and the baby has Down syndrome? OH!

Often hearing the news of a pre-natal or post-natal diagnosis of Down syndrome, or any other form of disability, can leave us speechless.  Not knowing what to say means we say nothing at all.

I have been on both the giving end and receiving end of this silence. It hurts. It hurt to not know what to say to someone, and feeling guilty about creating an empty space that got bigger. It hurt more to feel a sense of isolation watching those around me silently step back.

Simple tips – 

  1. Celebrate a life!  
    • Every mom wants to hear, “CONGRATULATIONS – you are having/had a baby!” , “He/she is beautiful!”
    • A congratulations card, not a condolences card, will be cherished.
      • Peter’s cards are in a baby box with all momentos collected along the way, just like our other kids
  2. Say something, something kind
    • There are going to be a lot of mixed emotions and maybe some fear. Not feeling alone on this journey is so comforting.
    • Don’t start with, “I am so sorry…”, instead start where you would with any other baby. Things like, “How big was she?”, “Can I see a picture of him?”.
  3. Listen
    • Don’t assume someone’s feelings. Instead ask, “How are you doing?”, and let the conversation go from there.
      • I met a Special Education teacher in Peru with a daughter with Down syndrome. She shared that finding out her daughter and Down syndrome was the happiest day of her life because she had, for years, prayed to be blessed with a child with Down syndrome.
  4. Be realistic 
    • Being overly optimistic can feel insincere, especially if there are health issues.
    • Encourage and support. A simple “I can’t imagine how you are feeling, but I am here for you”.
      • I will for ever be grateful to the many families who stepped in to help with our family and meals, allowing me to stay in the hospital with Peter.

We received a pre-natal diagnosis with Peter. While the vast majority of response was silence, the words we did get ran the full spectrum. One on end was “When are you having an abortion?”, “Not having an abortion is selfish”, and “I am so sorry, you must be completely devastated”. On the other end was “Congratulations! You are having another boy!”, “I am so excited for your family, you will be in my prayers”, and “I imagine this feels scary, but I believe your family is very blessed”.

Every parent and family will feel different, and their feelings may swing drastically from one day to the next. Reality is they are, in some way, grieving the loss of the baby they thought they were having. They are embarking on an unexpected journey.

Encourage. Don’t judge. Be kind. 

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“Week 4 in this hospital, what must I do to get outta here?!”, Peter pondered.

Comment below on words of encouragement you have received when having a baby, and you will be added to our drawing for three awesome gift packages on 3/21: World Down Syndrome Day!