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Walk a Few Minutes in My Shoes

It is the time of year to purchase supplies, pack the backpack for the first time, and take first day photos - back to school. Parents often send their children off to school with a mix of emotions - happy for them to begin a new adventure, but anxious for how the day, and the year ahead, will go. When the child arrives home after that first day, there are so many questions to ask:

How do you like your teacher?
Who is in your class?
What did you do in art?
What did you have for lunch and how was it?
Who did you play with at recess?
What was your favorite part of the day?
How was the bus ride?
Do you need any other supplies?

I want to ask all of those questions, too, however, I can't. For parents like me that have a child with a disability and a significant speech delay or a child who is non-verbal, our children can't answer these questions and give us any details. I wish that every teacher, administrator, school psychologist, occupational therapist, and staff member who has children would try to not ask their child any questions after that first day of school.

Not a single question.

Every time you want to ask something, bite your lip and don't. How long would you be able to wait? Half an hour? Two hours? Through dinner conversation? At tuck-in? The next morning? I also have a typical child, and I know I could not wait that long to ask him about his first day, and it's not that I don't want these parents to enjoy that first day excitement with their children. What I want is for them to try to walk a few minutes in my shoes, but, more importantly, to imagine what it would be like for their child to not be able to share things with them.

Imagine what it's like for my child.

You are my child's voice in many ways and what you tell me in his daily chart is what I can share with him. I appreciate the hard work you put in each day (and night), but remember, if you don't tell me, I don't know and he, therefore, doesn't get to share his excitement, needs, happiness, or frustrations with me.

The start of the school year is a new beginning. As we take these first steps, I hope we can all value the need for communication and for all IEP members to walk a few minutes in the parent's - and the child's - shoes.

  pile of shoes  
 
 

Go Play!

It's summertime and more opportunity for kids to sleep in, watch TV, play video games, and basically do nothing. We have heard parents say, or said it ourselves, "Go play!" to get the kids out of the house and doing something. Because I have a child with a disability I can't let him play outside like I would a child his age that would have more street smarts and maturity. So, I "go play" with him.

Sometimes I can bring outside what I was doing and keep working on it with him playing close by. Other times it means what I was doing has to wait. Though I would like to be able to send my child out alone, I have learned a lot by being there with him. I get to see my child in a variety of situations and get to learn him even better. Does he take turns without directive to do so? Will he reach for the stone in the water that is a bit farther out? Is he OK with getting dirty or, more likely, will he get extra dirty on purpose? Does he behave differently with mostly children around instead of adults? I have also learned what other kids are like when their parents aren't around and which of them are honest and caring or not. I have learned about my typical child from these times playing together, as well.

Parents of children with disabilities do additional things related to their child. For example, at back to school time, I write a letter to the parents of all of the children in my child's class briefly introducing him and his disability. We do an extra meet and greet with the teacher the week before school starts. I prepare an "All About Me" complete with many photos of my child explaining what he likes or doesn't like, how he learns, and more. I have to think things through for him more than a typical child since his expressive communication is significantly delayed and I often have to be his voice. All of these things take time and energy leaving me with less of both to put toward other things.

Though it would be easier to have more time to make a phone call or work on preparing dinner, the time I spend with my children is an investment and it is good for them and good for me. I, too, enjoy the play and the chance to just be in the moment and laugh. It reminds me to take a breath and to practice patience.

At my house things may not be perfectly clean, the laundry may not be put away yet, and dinner will be less than gourmet. But you'll have a great time nonetheless when you go play with us.

  three people playing outside at dusk  
 
 

 

#188Challenge

When I first heard there was a train crash in Philadelphia, my first thought was for my friend Gail. She takes the train from my hometown of Wilmington, Delaware to Philadelphia to her job with the company I first worked for out of college where we met. When the reports came in that there were fatalities, I kept thinking in my head, "Oh, please not Gail. Please not Gail." I felt guilty for this in some ways because I knew that someone would soon find out it was, in fact, their father, mother, sister, son, or friend and begin grieving an immense loss.

Gail was not on that train and was fine, but I thought about what would I have wanted to say to her if she was one of the eight passengers killed in that derailment and I no longer had the chance to tell her what she means to me. I thought of many things, and then I wondered if I should tell her now because she is alive and I can. Why not?

Dear Gail,

We have known each other for 24 years now and, since I was 21 when we met, that is over half of my life. At my interview with you I liked you right away. You have a warm, kind essence about you that shines through your amazingly beautiful eyes, but also a focus and determination to get the work done and get it done well. The company was very small back then, I was the 20th person hired, and their hire of you a couple of years before me was brilliant. You were a driven, organized mom, who took care of the rest of the staff, including the president, as needed. You could anticipate problems and when a crisis was happening, you were able to focus on the issue at hand and not get distracted in the moment. I respect you immensely as a coworker.

As a friend I know I can trust you without question. We have shared with each other happy times in life, but also the challenges. Years ago when I was struggling at a point in my marriage, you shared with me that marriage was one of the hardest things you've ever done. Hearing that from you helped me to know it's okay to feel confused and uncertain in marriage at times.

As a mother I hold you with the highest regard of an example of unconditional love. The continual effort you put into helping your children when they were younger through behavioral, academic, athletic, and relationship issues looked exhausting to me at the time since I did not yet have children, but I now understand that giving up was not an option for you. Though you were often dealing with significant problems, and sometimes alone as your husband traveled every week, you found a well to draw from each day to make it through and help mold them into the beautiful and kind adults and parents they are today. I am so grateful that you now enjoy the fruits of that labor with your children and grandchildren. I know you are grateful too, and don't take your happiness for granted. You probably don't realize it, but your example from decades ago has given me strength when I have my own challenges as a mother.

Though we don't see each other often at all, just knowing that you are there if I needed you as a resource and confidant gives me comfort and peace on the days that can be rough sailing. I want you to know this and to know that I am thankful that you were not in the Amtrak 188 crash.

Now, I challenge others with the #188challenge to tell one other person what they mean to you. Just one person. Why not?

!

  Amtrak 188 derailment  
 
 

 

 

Tim Tebow

Dear Mr. Tebow:

I am an LSU fan. I'll disclose that right upfront, and though you are the former University of Florida quarterback and rival of the LSU Tigers, that has nothing to do with why I am questioning something done by The Tim Tebow Foundation.

Please let me explain. The Tim Tebow Foundation planned the "Night to Shine" event held with 44 host churches, in 26 states, for more than 7,000 guests put on by over 15,000 volunteers. In an interview about the event, you explain that, "One of my biggest goals is to help the least of these, and one of those groups is special needs kids and we are trying to make a difference in their life and we are trying to make them feel like they are the kings and queens, because I know that's how God sees them and that's how we should see them." In a statement released by the Foundation you said, "This event perfectly fits our mission to bring faith, hope and love to those needing a brighter day in their darkest hour of need."

I appreciate all of the positive things your foundation does, such as helping orphans, building playrooms in hospitals, and encouraging others to serve people in their communities. However, I am concerned about the use of pity toward people with disabilities to bring volunteers to action. Let me give you a scenario. What if one of the participants at the Night to Shine event on Saturday goes to a job interview on Monday and sits down across the table from someone who volunteered at the event. Does that volunteer and now interviewer see that person as "the least of these" or see them as being "in their darkest hour of need?" Will they look at that person across the table and see them as "employable?"

Jerry Lewis has raised millions of dollars to help other people. Helping others is a wonderful thing, but using pity to get people to give has negative consequences for the exact people that are supposedly being helped. Several of Jerry's kids have grown up to realize this fact and speak out against it. People with disabilities don't need pity and charity, they need opportunities. Please don't continue old stereotypes that people with disabilities need to constantly be served. They can also serve.

I am sure you remember the October 6, 2007 LSU vs. Florida football game. You and the defending national champion University of Florida team got out to an early lead and were ahead by ten points in the fourth quarter. On this night in Tiger Stadium, however, LSU Head Coach Les Miles chose to have faith in his players five times on fourth down. Each time, his players showed he made the right call and LSU went on to win the game. I bring this up because that took an incredible (some would say insane) amount of faith by Coach Miles. I know you have great faith and so I am asking you to consider a new event that could include people with and without disabilities working and sharing together. Instead of "me" the non-disabled, and "them" the disabled, doesn't God teach us to be "us"?

Please have faith and believe in the ability of people with disabilities. As the mother of a child with a disability, I see that he has strengths and weaknesses, but I also see that with my other child, with myself, and with everyone. We can support all people by utilizing their abilities and not shining a spotlight on their vulnerabilities.

Thank you for your service and consideration,

Deborah Leigh Norman

PS I am also a lifelong Philadelphia Eagles fan and have faith you will be a great addition to the team!

  LSU versus Florida football game  LSU touchdown  
 
 

 

Response to my letter from the Tim Tebow Foundation:

Dear Ms. Norman -

Thank you for your recent correspondence. The foundation receives a great deal of mail and email from our supporters and yours definitely stood out to us. We appreciate your feedback and are grateful for an opportunity to address your concerns regarding Night to Shine.

We share your concern for the acceptance and equal treatment of people with special needs. It is very unfortunate that the quote you shared did not express our complete thought that "the world most often sees" people with special needs as the least of these, not Tim or the Tim Tebow Foundation. The foundation is committed to the Night to Shine event as a opportunity to embrace and celebrate the special needs community, not further single them out.

We have received hundreds of stories about how the guests of Night to Shine have been positively impacted from the event and many supporters recognize the beginning of a movement for right to life by the attention this event received. The volunteers who support this event do not look at the guests with pity, but with admiration for their strength and courage. The event is not about "them" and "us," but about God's love for each and every one of us and serving together to share it.

Thank you for sharing your thoughts with us as we take them very seriously and going forward, will be much more conscious of being clear that we do not see people with special needs as the least of these, we are trying to change the world's view that they are. We value your opinion and are grateful that you care enough to express your concerns with us.

We hope you have a very blessed day and Go Eagles!

Tim Tebow Foundation

 

Boxes

Having lived in four states around the country over the last dozen years, I have become proficient at moving and organizing.  I put items in boxes with labels to make things easier for me.  I have found that people often use the same approach with other people; they put them in boxes with labels to make things easier for themselves.  

In our country we have seen progress with rights for women and minority groups breaking out of the boxes society had established for them.  Progress for those with disabilities is another frontier of civil rights.  Having a disability is just one more way to be different and another labeled box to tear apart.  There is forward progress, but there are times when I see, or, rather, hear a step taken backwards.  It is when I hear someone use the r-word, retarded, in a belittling or pejorative way.  

The term "mentally retarded" was originally a medical term used by doctors that had a specific clinical meaning.  The word "retard" means delay or late.  More recently though, the r-word has been used to insult people and used as a synonym for dumb or stupid.  When used in this way it reinforces painful stereotypes of people with intellectual disabilities as being less valued members of our society.  This undermines the effort by so many people and elongates the time it will take for people with disabilities to be treated equally.  Even when the r-word is not said directly to someone with a disability, it is hurtful to the millions of people who have a disability and the many millions more who love them.  

As the mother of a child with a disability, when I hear the r-word, I feel punched in the gut and that what I do for my child and all the hard work he puts in everyday is devalued.  Attitudes and language are intertwined and drive actions.  Language choice demonstrates respect and it matters.

When we receive a present, one of the best parts is not knowing what is inside.  It would be much less exciting to open gifts if each box had a label on it listing the contents.  Like everyone, people with disabilities are multi-faceted.  Let's choose to look at all people as a gift, and not put them into a box, as we open our minds to truly see each person for who they are.  

For more information please visit r-word.org to learn how you can spread the word to end the word and take the pledge:  I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

 

  many boxes stacked together  
 
 

World Down Syndrome Day - The Bright Side

For World Down Syndrome Day, 3/21, here is an article reflection done by my typical son from his middle school genetics class:

In this article, they discussed some of the ethical issues related to designer babies. The goal of one company was to reduce the risk of you having a baby with a sickness or disorder. The founder was motivated to start this company because her son was made with a sperm donor, and he has a deficiency that doesn’t allow him to change fats into sugars. The company has paired up with a sperm bank, and they then choose the least likely combination for a child with a deficiency and pair them up.

In my opinion I think that the fact that certain diseases could be abolished or minimized is very important. If we could stop having children with colorblindness, no one would have to live in a world without color, and if there is a gene for cancer, we could prevent so many families from having to go through that. If people didn’t have to worry about having a child with a certain disease, it would take off a lot of pressure on the parents, and some of the tension would be lessened if deficiencies weren’t a problem.

Since I have a little brother with Down syndrome, I would say that the biggest concern to me is: would people stop having kids with Down syndrome? I love my brother to death, and I think that he has taught me a lot more than if he had been “normal” (though there is no such thing as normal) because of the challenges he faced growing up. I think that anyone can benefit from raising a child with a disability, people just don’t look on the bright side, and they always think that it is bad. I don’t want to live in a world without people like Devin, he has brightened my life, and I think that the world would suffer if there suddenly weren’t any people with disabilities.

  I love my brother  
 
 

Pool Toy

This is a toypedo:

  toypedo  
 
 

It is a fun pool toy. We have lots of pool toys since our whole family enjoys swimming and always has. A few weeks ago my son was playing at the pool and I had set out a few toys. Another child came along and started to play with the toypedo. Eventually my son noticed this other boy playing with his toypedo and began following him. The boy saw my son watching him and he pushed the toypedo in the water in a direction away from my son and so that he could get to it first. He did not know it was our toy and it looked like he thought my son was going to take it from him. Later, when it was time for us to leave, I asked the boy for the toy since it is ours and not the pool's. His mother asked me where I got it because her kids thought it was neat.

This week we were at the pool and that family was there too. Each of the three siblings was individually playing with their own toypedo. I'm not sure if they got three unique versions so each child could have their own and keep from any arguments over which one is whose. My son had never seen so many cruising around under the water before. He, again, followed and watched the different colors of each one as it zoomed past in varied directions. These children, again, seemed to think my son was going to take their toy and were zooming their toys in a direction away from him.

I was really amazed at how these children play with the same toy. We use this toy to have a catch and zoom it to each other under the water. When my son first saw the boy playing with our toypedo weeks ago, he wanted to play catch, but due to his language delay he does not have the words to clearly say, "Do you want to play catch?". When he saw these kids playing with their new toypedoes this week he, again, would have enjoyed playing catch with them, but that is not how they played.

It is interesting how people can look at the same thing and have different ideas of how to use it. Some think more cooperatively and some think more competitively. How do you think?

 

For You?

My son with Down syndrome has had some amazing teachers, administrators, assistants, and therapists during his school years so far. I can tell some of them truly love what they do and care deeply about the children they work with each day. But my son has enjoyed some teachers more than others. Like any of us he has certain preferences for approach, style, tone, volume, etc. He is more in sync with preferred teachers and, therefore, gets more out of interacting with them.

I cringe when I hear a teacher give my child some directions and then ask, "Can you do that for me?" I hate to burst this teacher's bubble, but they might not be one of my child's favorite teachers and he might just want to answer that question with "No." Then what? I hear this question so often I don't think many teachers realize how often they say it or that it is, indeed, a question. Instead of asking, "Can you do that for me?" after giving my child instructions or making a request, I would much rather hear a teacher say, "You can do it!" Make it a statement of encouragement that you believe he is able and not a question that maybe he can and maybe he can't. Also, you will not always be there, so then who should he do it for next time? He should do it: for himself; because it is the right thing to do; because that is appropriate behavior; and because he is able.

My son loves giving gifts and cards to his teachers. Let's leave that what he does for you, fine teacher, not walking in the hall with his hands at his side.

  You Can Do It post-it  
 
 

What You Need

Front row, center seat. That's where I saw INXS during the Kick World Tour in Philadelphia in August, 1988. I was in college and had slept outside the Spectrum with three friends from high school months before to get tickets. Seeing where we were in line, we knew we would get good seats. As the moments were closing in on 10:00 a.m. when they would start selling tickets, a guard led the line toward a window and then another guard motioned at us to go to a different window so we were first at that window. When the woman opened for sale, my friend asked for 12 tickets. The woman told him the row and seats available and he said, "Yes!" We walked away tired, hungry, but in shock at our great luck.

We were so excited the evening of the concert. It was a warm, sunny night and very pleasant. Once the show started we had people pushing us and literally standing on our shoulders jumping to the stage hoping to make it and touch the beautiful lead singer, Michael Hutchence. One by one they fell into a pit with large security guards that would take them away. The tour traveled around the world from Canada and throughout the United States to Europe, Japan and, of course the band's home country of Australia. The show was full of great energy and we enjoyed the amazing sound coming from the stacks of amps around us. We were huge fans of INXS, a band started in 1977, and three of the six members are brothers. This night was special for us.

As wonderful as that was, I can't listen to INXS now and turn the channel if it comes on the radio in the car. This band that was such a part of my college experience is now something that brings me great sadness. The lead singer, Michael Hutchence, died in 1997 at the age of 37 and his death was determined to be a suicide. The song that I specifically can't listen to is "What You Need" that Michael co-wrote, like so many other INXS songs.

So often we tell people what they need.

You need to:

read this book
relax
work out more
try harder
stop wasting time
lose weight
take a vacation
sleep more
eat better

on and on and on.

But if someone asks, "What do you need?" are we able to answer that? Do we listen to ourselves and use that same judgment we use so quickly on others on ourself to honestly say what we need? Why is it often hard to say, "I need …" and feel worthy of whatever that is that would help us? Do we fear it makes us look weak or are we so busy we don't take the time to assess, feel and communiate our needs?

There is a "Kick, the INXS Experience" tour that is a tribute to INXS. These entertainers are keeping the music of INXS alive. I wish that Michael Hutchence was alive, beyond his music, and had been able to get what he needed. I would have loved to go to another concert and gotten stepped on some more.

What You Need
Hey, here is the story
Forget about the trouble in life
Don't you know, it's not easy
When you gotta walk upon that line
That's why - You need
That's why - This is what you need
I'll give you what you need
Don't you get sad and lonely
You need a change from
What you do all day
Ain't no sense in all your crying
Just pick it up and throw it into shape
Hey you, won't you listen
This is not the end of it all
Don't you see there is a rhythm
I'll take you where you
Really need to be

"What You Need" was written by Andrew Charles Farriss and Michael Kelland Hutchence.

  INXS Kick    

 

Inclusion’s benefits – not only for the child with a disability

Research has shown that having children with disabilities included in a typical classroom setting is positive for that child.  It has been demonstrated that a variety of things, from language development to social and communication skills, improve at a faster pace for a child with a disability when they are included with their typical peers.  But does having a child with a disability in the classroom help the typical students, too?  

Under IDEA, special education is not a place, a placement, or a specific program.  Special education is a “service for children rather than a place where such children are sent.”   Federal law does consider the impact on children without a disability when a child with a disability is placed in their classroom.  Each school district is to provide the appropriate supplementary aids and services for the unique needs of each child with a disability in order to implement their IEP in the regular classroom.  If, however, even with the appropriate supports, a student has behavior problems that are so disruptive that they negatively impact the education of the other students, then the regular classroom is not the proper placement for that student at that time, and another setting is needed.

That teachers, researchers, and parents are asking about the impacts of instructing students with and without disabilities together is a good thing and shows growth in our education community.  Having a student with a disability included in a class should not be viewed as an altruistic activity or be thought of as being harmful in some way to the rest of the students if it is not.  The growing body of research suggests, in fact, that students without disabilities gain a number of important benefits from relationships with their classmates who have a disability.  Social skills, self-esteem, problem solving abilities, and comfort level with people who are different all increase for the typical student in an inclusive setting.

But it is more than the social and emotional growth that happens with students when a child with a disability is in their classroom.  Students without special needs benefit from inclusion academically as well.  Research has shown that students without disabilities made greater progress in reading and math when served in inclusive settings. (Cole, Waldron, Majd, 2004). When high behavior expectations are set for the entire school community and consistently supported, academic achievement increases and the whole community benefits.

Schools that offer a supportive and flexible environment with a variety of academic offerings, such as tutoring, reading groups, alternative technologies, and literacy specialists help students with disabilities, English Language Learners, and gifted and talented students as well.  When students have varied ways to practice a skill, they are more academically engaged.  By teaching a concept or reviewing a lesson with a student with a disability, the typical students strengthen their own subject knowledge.  

The additional special education staffing can have benefits to the typical students.  Para-professionals, occupational therapists, physical therapists, and speech and language pathologists provide an added classroom presence and often consult with teachers making recommendations that positively impact the entire classroom setting.  

All teachers need training and ongoing support whether through workshops, attending conferences, or college courses and it is important for this aspect of inclusion to not be overlooked.  More teachers are getting experience with inclusive classrooms while doing their student teaching before graduation.  The US Department of Education has given support to a variety of professional development and training programs regarding instructing students with disabilities in inclusive schools.  These materials provide strategies for collaborative planning and problem solving, curriculum modifications, technological adaptations, and parent and family involvement.  The knowledge and strategies that teachers gain when they utilize these additional resources are often beneficial to multiple students, not only those with an IEP.  It puts more tools in the teacher’s tool belt.

My best example of the success of inclusion for the child without a disability is my own typical son.  He is in the gifted and talented program and I believe his being a big brother to a child with Down syndrome has positively impacted his academic success.  It is similar to the Montessori model where the older children teach the younger children.  If, on his first explanation, his younger brother does not understand something, he must think of a different way to explain or show the idea.  This creates his own deeper understanding and improves his self-confidence.  

In addition to the academic gains for my typical child, I see so many other positive impacts of him having a sibling with Down syndrome.  The enhanced empathy, but not sympathy, is something I could not have taught.  This skill is something that makes him a better, more confident person in his interactions with everyone, whether they have a disability or not.  Knowing when and how to push and support his brother carries over into his interactions with other kids on his sports teams too.  He most recently won the leadership award from his cross-country team.  

I also see these benefits for the students who have been in class with my son with Down syndrome.  As they interact with him they gain confidence and purpose.  Some feel the desire to be a better friend and role model or to step in and say something if someone is being unkind.  Some students are already older brothers or sisters and use those same skills to provide natural support to my son reinforcing their leadership and task completion skills.

Like most parents of a child with a disability, I am the parent of a typical child too, so I understand the typical parent perspective as well.  If I thought that my son with Down syndrome being in an inclusive classroom would have negative consequences for the other children, I would not ask for or expect him to be in that setting.  I do not want my child to impede another student from reaching their potential.  It is because I believe that the addition of my child into a typical classroom has benefits for everyone in that room, that we choose that model.  

I understand some parents having concerns about a new situation and that is why I send out a parent letter at the beginning of each year.  I don't want my child or the words "Down syndrome" to be thought of in a bad way or as the elephant in the room that people awkwardly deal with or, worse, avoid.  Through this letter I try to educate the parents and hope that they will understand the value of an inclusive classroom for their student too.

We can teach our children the parts of a plant:  roots, stem, leaf, flower, etc.  But when they have the chance to plant a seed in a cup and watch it grow, that has such an impact.  We talk about diversity, equal rights, and respect for others, but when students live it everyday they are learning how to be a part of a community.   Empathy, kindness, compassion, and perseverance are developed in inclusive classrooms.

If some parents want to exclude my child from the classroom because he has Down syndrome, what other reasons would be appropriate?   Should the child who is disorganized and doesn’t have their class materials in order so the teacher spends time searching in their backpack, desk, or locker with them be excluded?  If a child has dietary choices that smell different and another child doesn’t like sitting near them at lunch, should they be excluded?  What about the sensitive or emotional child with whom the teacher often spends time calming down or getting back on task, should they be excluded from the typical classroom?  The point is that all children are unique, they all require attention from the teacher, some more and some less, and they learn how to get along in a classroom just as they will learn how to get along later in life in their job and neighborhood.

Thankfully we are not born with prejudice and if children can be exposed to difference, ask questions, and have those questions honestly and accurately answered, they realize we are all different in our own way and different does not equate to bad.  As we age, however, we often gain prejudice and sometimes there is misguided parental concern about inclusion.  If only these parents could look through their young child's eyes and not focus on the difference and pre-conceived ideas about someone, but rather see them as another person of value and worth.

Life is inclusive.  All children want to be accepted and to make friends.  Once a child with special needs leaves the school setting, it is important that they know how to navigate the world, which has mostly typical people in it.  Their exposure to typical kids during their school years will be key in their future success.  The typical students also get a richer experience socially, emotionally, and academically from their education with students with disabilities.  The connections they create with a variety of peers will have many positive, long-lasting impacts.  Each child has something to teach.  The students are open to learning these lessons.  Are you?

When given a prompt to write a letter to anyone, several of the students in my son's class chose to write to him:

  letters from classmates to my son with Down syndrome    
 

 

Reflection

When we look into a mirror there is a lot going on. Light behaves in a very predictable way and when it reflects off of a flat mirror it follows the Law of Reflection. The ray of light approaching the mirror is called the Incident Ray and the ray of light that leaves the mirror is called the Reflected Ray. These two rays create an angle to the normal (think of it as the middle), and the Law of Reflection says that these two angles are always equal.

 

  law of reflection illustrated  
 

 

After ten years of having a child with Down syndrome I have learned that the Law of Reflection does not apply when people look at other people.

What people see when they look at my child is not a reflection of him, but, rather, of them. If they see disability it is their own disability to not see that everyone has abilities. If they see difference it is because they want to see difference and they think what he is or has is something so different from their life. If they see lack of ability in him it is their lack of ability to see beyond one small part of him to the immense quantity of other things there are to see about him.

Each person is unique but when we meet someone, do we look for commonalities to ourself or differences? That probably depends on our initial feelings about that person. If we like a person we meet, do we look for more commonalities and if we see them as different, do we look for differences to confirm that initial feeling? If the commonalities are not obvious at first, are we willing to look more closely or is it easier to just see the differences on the surface? Do we like what we see in ourselves by how we see other people?

Unlike science, people behave in a very unpredictable way, and I have learned that what there is to see in someone and what is seen in them is not always equal.

What do you see?

 

Dear Black American Mom:

I enjoyed talking with you at the annual family picnic last week, your first since you joined this community a few months ago from another state. Our discussion of your scouring of schools to find the right placement for your son shows your dedication not only to his academic future, but your desire to find the right fit for him socially and racially. The statistics you cited from your school search and meetings with top-ranking district administrators show the priority he is in your life.

I thought about you a few times this week. I thought about the death of Michael Brown in Ferguson, Missouri and wondered how you feel about that raising a black son. I expect my two sons will do stupid things when they are teenagers, didn't we all? But as a white mother, I also have the expectation that my sons will learn and, of course, live through those poor choices. You, as a black mother, do not have the luxury of that same expectation. Your son could be misinterpreted, in the wrong place at the wrong time, with the wrong crowd, and not live through such a poor choice and, even more sadly, be harmed at the hands of law enforcement officials who are supposed to protect each of us. What do you tell your son about this situation? Do you try to hide it from him? With all of the news coverage that seems impossible. One day my heart broke for Michael Brown's family when CNN set up dedicated music they played each time before discussing the updates to that story. What do you think when you hear that music, that you hope that nightmare never becomes yours?

What do you do during a week like this when there is one bad news story after another about black American men. Ray Rice, Jameis Winston, Jonathan Dwyer? Even if you try to shield him from one or two of these stores, there are so many won't he hear about it at school from other kids? How are the choices these men made impacting the present and future for your son? Then there are white men, NFL Commissioner Roger Goodell and Florida State University Head Coach Jimbo Fisher, making decisions regarding these black men's futures. What message does that send?

As the mother of a child with Down syndrome, a minority in a different way, I know that when I see something in the news by someone with his same diagnosis I take notice. Sometimes it is a positive story, and I like to share it, and other times it is something I cringe at and do not share with my son. Because there are not a lot of stories in the news related to Down syndrome and he is still young, I can mostly control what news he does receive. With the deluge of coverage on the stories of the men I named above, the possibility of shielding your son from them is much harder if not impossible.

Do you use President Barack Obama as an example of a successful black American man that achieved what many thought impossible? Your son is nine years old, so for most of his life he has lived with a black President. He does not yet understand the enormity of there being a black President of the United States and the prejudice that existed even just 30 or 40 years ago. Being President is a demanding job with many hard choices to make and plenty of critics for each choice made, so I'm not even sure that bolsters the status of black men as an example for your son with all of the harsh and sometimes nasty critiquing of the President.

So, my sister in motherhood, we each have challenges raising our sons, minorities in different ways. I think of you and hope you have the continued resolve and energy to devote to your son now and for his future. I don't doubt that you will.

  blank letter  dear...  

 

Back to School

Not even the middle of the month yet, but time for the kids to go back to school. I wish we had a few more weeks together to soak in the beautiful weather and each other's company. Though I do appreciate time away from the boys, I feel fortunate that they get a long very well and our summers are enjoyable.

Of course, as someone who likes to have a plan, I made a list of things I wanted to do with them over the summer. We got through almost all of the items on the list, plus some unplanned things. My list for back to school includes a few steps in addition to the standard school supplies and new shoes. Having a child with Down syndrome who has a significant language delay, I prepare an "All About Me" booklet with information about our family, his likes/dislikes, favorite activities, and more with many photos to give the teachers a glimpse of my son. I want them to understand all that he can do and what our expectations are of him. It would be hard for any mom to describe their child in a few pages, but I do this each year because I know the teachers' time will soon be filled and this is my one chance to give them a snapshot of him that he often can't flesh out verbally and give details to them like other children.

So off we go into another school year with fingers crossed, hopes high, and time to work on some other lists.

  back to school list  

 

Memo

You didn't get the memo? Of course not, because there wasn't one sent. There will never be a memo to remind you to listen more carefully or to absorb your surroundings - the sounds, smells, of what's going on around you. You don't get told, "this will be the last time to swing your child around by the arm and leg, this is the last time to throw your child in the pool, this is the last time you will carry your child piggy back, this is the last time your child will go to sleep believing in Santa Claus, this is the last time your child will need you to wipe their bottom, this is the last time you will clean up crushed Cheerios in your car, this is the last character lunch pack you will buy, this is the last time your child will feel safe raising their hand at school, this is the last time you will be the person your child will miss you the most when they go away." There is no memo to remind you to enjoy and soak in a moment a little more. Perhaps since it is summer and we as a family have some more relaxed time together without the rush of the school day and homework, I am reminded that we need to slow down so we can appreciate and savor special moments.

At the other end of the age spectrum is the same thing with my parents. I didn't know when I was having the last conversation with my mother, or the last conversation with my father where he was 100% there with me and his brain not stolen away to Parkinson's Disease. We don't get told, "Smile, this is the photo that will be used in your obituary." No one tells you that and that is a part of life, not a choice. But how we live life is a choice. Do we appreciate? Do we savor? So often we rush through and go through the motions of an activity or an afternoon, but someday we may look back and realize we should not have stopped playing with our children to clean up, or pick the weeds. That doesn't matter in the end.

I want to wake and remind myself everyday that today may be the last something and I don't want to push it out of my way and regret that later. I need to be more deliberate with my time, my friends, my family, my children. I try to remind myself that I will not lay on my death bed thinking how glad I am that I mopped the floor so often, but I may lie there wishing I had let it get more dirty and used that time with my husband and children. As I get older time gets more valuable to me and I feel a more intense need to be more purposeful in how it is spent because it is not infinite. I see that time is a precious and scarce resource and I have to use it with great consideration.

I wish there were memos telling us these important things when they are happening, but there aren't so we must enjoy the moments that we'll never have again.

   

 

Trail Narrows

I've been running a long time. My first season of track was when I was nine years old. On and off in the...decades since then, but mostly on especially in the last decade when I've completed a half and full marathon. Recently I was on one of our local paths. They are very nice and continue to grow and connect the community having received an Oprah's Big Give award and much support to expand. As I was running I saw a sign "Trail Narrows." The trail does a small turn and narrows for a portion and then turns back and resumes the regular width. However, when it returns to the regular width there is not a sign that says "Trail Widens" and it made me think about how we often only focus and point out the negative.

Why is that? When we get our children's report card, do we wallow in the good marks, or do we go right to the areas that need improvement or are unsatisfactory? What is our expectation when we face each day? Is it for good or bad news? Are we trying to brace ourselves to know just how bad the next bad is?

  Trail Narrows sign  

 

Having a child with a disability I constantly feel like my "to work on" list with him is very long: jumping rope, reading, articulation, buttons, spelling, handwriting, and on and on. I have learned to be part speech therapist, occupational therapist and physical therapist with no formal training, but driven by a desire to help him achieve to his ability. I never seem to get to all of the items on the list and often end the day with some guilt and a hope that the next day will end with more items checked off than today.

Sometimes my son will do something and remind me how to just enjoy a moment. He can get me to stop focusing on the negative - what is undone, and instead focus on the positive - all that is done, and stop and savor how sweet that is. He, too, is part therapist with no formal training, and he teaches me that we need more celebrating and to enjoy when the trail widens whether there is a sign telling us that or not.

 

To Ride a Bike

Welcome warmer weather! I love being outside and even more this spring after the brutal, polar vortex winter. I have always enjoyed outside playing and am grateful I get to do that with my children. Even when we moved to Baton Rouge, Louisiana - in July! - we still spent a lot of time outside. My younger son who has Down syndrome was just two years old and he loved to push his riding truck. We would do that one mile walk around the neighborhood three times a day and I would take a shower three times a day. I had never sweat like that in my life, but he was happy, it was great exercise for him and so we continued to spend a lot of time outside even in that incredible heat and humidity.

As the boys grew, walks continued, but we also added bike riding. My older son learned to ride a two-wheeler when he was four, and my younger son could sit in the back of a bike baby seat, so we were off and riding. Day trips, vacations, or just around town, we would ride our bikes often. Eventually we moved my younger son to a Trail-a-bike attachment behind my bike. The first time we tried it out we did so on a school field, and I was holding my breath that he wouldn't fall. He did so well and sat so tall in the seat that my husband convinced me that same day to ride around the lakes. I know I couldn't have held my breath for those entire four miles, but it felt like it.

Continuing the progression of him learning to ride a bike, I bought a balance bike for him to try along with his bike with training wheels. Then I attached a handle to his small bike and took off the training wheels. This handle was the best tool toward him learning to ride. It also got him out of the stroller and getting exercise too when I went for runs with him. After a while, I was able to start letting go of the handle for a few seconds. I wanted him to feel what holding his balance was like. Eventually the length of time grew and he learned to ride by himself. But the progression didn't stop there. He had to learn steering and braking. Then he had to learn how to get started by himself. Then he learned how to ride up the driveway, a small incline, and keep pedaling into the garage. Then he learned how to ride down the driveway and make the turn onto the sidewalk. Even with all of these steps accomplished we are not done the process of him learning to ride a bike. Next we plan to have him try a bike with gears.

This long, step-by-step process is similar to many things my son with Down syndrome has accomplished such as walking, potty training, putting on and zipping a coat and much more. He did it, but it took a long time and it made us break down into small components the term "ride a bike." He helps me to slow down and see all of the steps that go into something, which makes me appreciate it in a whole new way with a whole new joy.

Last summer while cleaning out the garage we decided to sell the balance bike, his small bike and the trail-a-bike. We felt some sadness in letting them go as they had been a part of our lives for years, but it was also with hope and excitement for the new children that will put them to use and, hopefully, learn to ride a bike.

 

  green bike  

 

Ten Years Later

My son with Down syndrome was born ten years ago. The years have gone quickly as has my run up the learning curve for being his mom. I look back at the mom I was at the beginning and wish I could give her a glimpse of me now to know it would all be good, but I know that me of a mom wouldn't believe it.

I did speak with other moms that were further down the road than me as I was afraid to take the first step as the mother of a child with Down syndrome, holding my breath until I had to breathe and begin this journey. Three conversations in particular stand out to me even after all of these years.

The first was a nurse and mom who has four children. Her name and number were given to me from a nurse at the hospital where my son was born and in the NICU for a month since he was premature. Her youngest child, also a boy, was six years old and has Down syndrome. I talked with her as she was just getting home and letting their new puppy out in the back yard. I talked with her about several things including breast feeding. I don't remember much of what she said except she kept saying "it will be okay" and I was shocked that she was putting forth so much energy toward this puppy. I see now that it was okay for her to put effort toward a puppy because her child did not need her every second. She did not get too wrapped up in or focus solely on her child's disability. Balance and perspective I did not have.

The second mom I spoke with has three sons. Her name and number were given to me by a friend from college. She said she would talk with anyone, anytime, anywhere about Down syndrome and she did. Her child with Down syndrome was 10 years old and is her oldest son. From her I saw how she viewed his disability as normal. He was just her son, like her other two boys, and the Down syndrome was a small part of who he was like having curly or straight hair. From my starting point the disability was huge and I couldn't understand what I thought was minimizing it. I did not yet know all of the facets of my son and see all of his other amazing characteristics.

Like the second mom, the third mom I spoke with also has three sons and her son with Down syndrome is also her oldest. Her son, however, was in his thirties. This mom's words had the most impact on me. I could tell she had such wisdom which comforted me, but I still didn't understand much of what she said. She told me that when her middle son was in high school and he had gotten involved with a group of kids making poor choices and was heading in a bad direction for a couple of years, that was much more problematic in her life than her older son having Down syndrome. She was glad to hear I have another child and even encouraged me to have more children to keep the magnitude of a child with Down syndrome in perspective and not be the only focus of the family.

She shared with me that when her son was born in the early 1970s, there was still the possibility of giving him up to an institution. She brought her child home from the hospital and her husband got out the camera and took a picture of their new baby. That's when she knew they would love and raise this child together. Her son had been working for a bank full-time for the past eight years, went to the gym each day after work, and had a social schedule each weekend. The best part of having a child with a disability for her was all of the amazing people they have in their life because of him. I did not understand that there are many supportive people in communities that care for all people in so many ways.

After ten years I have learned so much and I am grateful for all of the lessons. These three women gave me a glimpse ahead that I did not believe, but now I do. I too will speak with anyone, anywhere, anytime about Down syndrome, even if they won't believe me until years later.

 

  birthday candles  

 

 

World Down Syndrome Day

Last week, after yet another snow day and finally shoveling down the entire driveway, I turned to walk back up to the house. It was cold and the wind was really blowing. I saw my son holding the sled cord as the sled itself was whipping around in the wind. I thought, oh how frustrating for him. The wind keeps blowing the sled and he can't get a hold of it. But as I continued walking toward him I realized he was not frustrated and kept doing it. I asked him, "What are you doing sweetie?" and he said, "I'm dancing!" His way of looking at the situation, an opportunity to dance, was much better than mine. On this World Down Syndrome Day I am so grateful for how my son with Down syndrome teaches me to re-frame how I look at things and see the positive through his glorious eyes.

  World Down Syndrome Day logo  

 

Unconditional

February - the month of Valentine's Day and love.  The words "unconditional love" are used often and I hear them most often used to explain the love of a parent toward a child.  But is that love truly unconditional?  I have wondered that many times.  If it is, when does that unconditional love begin?  Is it when the child is still en utero?  We hear people say things like, "We already have a boy so it would be nice to have a girl, but as long as it's healthy."  I have been curious to ask, "What if it's not healthy?"  Will the parents love their new baby any less?  Is that love conditioned on the baby being healthy and what exactly does "healthy" mean?  

Does the unconditional love start once the baby is born and the parents get to see their child?  As they count the fingers and toes, what if there are not the desired ten of each?  Did they love that child conditioned on them having ten fingers and toes and if they don't, then what?  

My son had a speech therapist for about six months while he worked through learning the "r" sound in first grade, a common mispronunciation.  "Ellie" was a very nice, recently married, pretty woman in her mid-twenties.  Everything about her was typical except she did not have a fully formed hand on her right side.  For an unknown reason it just did not form.  Ellie didn't bring attention to it nor hide it and she had a great attitude about it.   She said that's just how she was made, and it didn't stop her from doing things either.  Playing softball, monkey bars, etc., Ellie said she did it all growing up; she just did it a little differently.  

What about a baby that seems healthy, but later is diagnosed with a condition.  For example a child may be diagnosed with autism at age two, three, four years old or older.   Does the love their parents have for them change?    

Is part of a parent's acceptance of a difference or a new diagnosis also having to answer a really hard question - do they love their child unconditionally?  I think it is, and that parent has to dig deep to answer a question they had only pondered before, but never had to guide to a conclusion until now.  Is what they now see in themselves consistent with who they thought they were or how they wanted to be perceived?  

I am not a big Katy Perry fan, but I do like her song "Unconditional."  One line I like is as follows:

Acceptance is the key to be
To be truly free
Will you do the same for me?

  - Katy Perry, Dr. Luke, Max Martina and Circuit

I hope we can feel free in our hearts as we accept - and love unconditionally.  

     
  unconditional love  
     

 

No Off Button

Having had a child with an extra chromosome for almost ten years and having lived in three states in that time, I am connected with several listservs, advocacy organizations, newsletters and more. I have found some very useful information for my son from these resources over the years.  

Sometimes, however, after reading the title of an email I hope the information inside will be for me.  For example "What to do during a meltdown" sounded priceless.  However, when I opened the email the information was for the child's meltdown, not for mine as I had wished.  It included ideas for how the parent can help their child during a meltdown, such as giving them a deep pressure hug, offering the child a drink of cold water, or letting the child throw a pillow.  These are good suggestions and different things work for different kids.  I appreciated the variety of ideas, but still, I thought, “what about me?”  The recommendations continually repeated that of utmost importance is for the parent to stay calm, but there were no how-to's for that.  

     
  smile on nuclear reactor  
     

The same thing happened when I got the email entitled: "10 tips for a good night's sleep."  Great, I thought, I sure could use some tips, but, again, it was about how to help the child.  Sure, some of the ideas like body positioning and weighted comforters could be useful for adults too.  The massage option sounded great!  But what about when I wake during the night and can not get back to sleep because I am aching to help my child, but do not know where to begin?  How do I sleep when I wonder where more patience will come from inside of me?  How do I get my mind to rest when I worry about if I will be able to make it through the next day without crying as I feel a tear glide onto my pillow?  All the while I lay there knowing I need sleep, but I can not find the off button.  

Occasionally if an article or email is about a very specific disability and not my child's, which is Down syndrome, I do not utilize the information but I try to at least glance through it to learn about other disorders, chromosomal differences, and challenges.  There is often very good information and ideas, and I don't mean to sound ungrateful for the tips shared to help our children.  I just think we spend so much energy on our children that we often do not have any left for our selves.  

My children are older now so they do not have typical toddler meltdowns, but, unfortunately, I have not outgrown the occasional breakdown.   What do I do on those days that the load seems particularly heavy?  The days when I feel: unsure of which direction to go; alone; misunderstood; or empty from giving so much.  It doesn't happen often, but when it does I sure could use the top ten specific tips to get me past my meltdown.

As the World Wide Web has changed and evolved, opportunities for parent-to-parent sharing have increased.  The deep honesty some bloggers share is truly beautiful.  When I read a post of feelings I have matched exactly I am thankful for that parent’s willingness to share the highs of their victories and the depths of their dark moments.  It does give me strength to know that I am not alone in my feelings and worries and that other moms have gotten through some incredibly difficult challenges.  

I will always feel the desire to prevent my children’s meltdowns even if those strategies do not help me with my own.  Forever I will think of my children when I wake up during the night.   As a mother, I know there is no set of tips to diminish my concern for my children and there is no off button.

     
  AppleMark  
     

 

A Gorgeous Glimpse

Did you ever get an email that wasn't meant for you? It's like getting a glimpse into someone's life - unfiltered and unframed. We have all had a moment like that where we got to see the real, no make-up, stripped down version of someone. Sometimes that glimpse is not so pretty, but sometimes what we see is wonderful. Here's what happened to me.

I started a neighborhood email list when we moved to a new subdivision. There were only eight houses and I thought it would be nice to have some contact with each other. As new neighbors move in, we have over 30 homes now, I send out an updated list to everyone. Recently I sent out an update and a neighbor emailed me back the next morning at 11:56:

"Thanks for sending this out. Hope your summer is going well. Stay cool!!"

Then another email from the same neighbor, also at 11:56:

"Hi sweety.....could u print this?"

Then at 11:59 she sent:

"Hi.......I didn't mean to send the last email to u!!!! It was meant for (husband's name)!!"

This couple moved in a couple of months ago. They have two grown daughters that live elsewhere and a dog that we have watched for a couple of weekends to my boys' delight. I thought they were very nice, but getting this small visual into their relationship was even better. They have been together a long time and yet I loved the tone of her email to her husband: saying "hi," calling him "Sweety," and asking for something, not ordering. This was their real relationship and it was lovely.

I like having couples around that have been married longer than my husband and me as a sort of inspiration because, although I love my husband very much, marriage can be quite challenging.

She signed the email to her husband "hb." I know he is "Sweety" and I like to think that she is "Honey Bear" but I will probably never know. That's okay. I've got the gorgeous glimpse to savor.

 

Release

Release - I've decided I like that word. I think of it as setting something free. This week I attended the book release party for the mother's anthology Monday Coffee and Other Stories of Mothering Children with Special Needs. I enjoyed meeting the editors with whom I had only communicated via email previously. It was wonderful to hear their story of how much thought and effort went into the creation of this book and now they were enjoying the moment of release, accomplishment, and conclusion.

     
  monday_coffee_book_cover  
     

 

What happens before or after a release can be good or bad. For example, you may have seen or heard about balloon releases, butterfly releases, or dove releases. Though these events can be aesthetically pleasant, we know that what happens afterward is not always good. These events can do harm to the creatures involved, both the butterflies and doves that will likely not survive, and the balloons that can do harm when they come down to other creatures on the ground who may ingest them.

The existence of what went into this book, also had some parts that were not so good, but they happened before the release instead of after. The struggles, challenges, even anger and tears that I and the other authors experienced and felt were very hard, but we have made it through those challenges and can now share them, release them to teach and learn.

I think we all have things we can let out and feel better about afterwards. Let's let the butterflies be and instead release what is better set free from our bodies, hearts and minds.

 

Here we go!

On November 1, in three short days, "Departing Holland" the first writing piece I ever submitted, will be available in the new book Monday Coffee and Other Stories of Mothering Children with Special Needs. I have been busy getting this web site together and am glad to have it launch. Like many changes before in my life, such as becoming a mother, moving one thousand miles, having a child with Down syndrome, and others, I am not sure where this new path will take me, but I am excited and grateful for a new opportunity. I am also not alone since there are a many other contributors to this book and I am looking forward to getting to know them and learning from them as well.

My hope for this blog is to share - whether it's funny stories, new skills acquired by our children, struggles, successes - the wide range of things we experience every day by being humans, spouses, siblings, children, parents, parents of children with special needs, and much more. Which brings me back to the web site design.

     
  web_design_puzzle_etters  
     

As I have been learning about building web sites I have learned that different items within a web site are in different containers and then those containers are given properties such as font style background color, etc. So, for example, this text is in a paragraph, that is in a container, that is in a body. These items all exist together. It's like my list above: humans, spouses, siblings, children, parents, parents of children with special needs. One of those things does not singularly define me or stop the others from also being true. All of these things together are valuable and give me perspective.

Please let me know what you would like to see here as we share and learn together.