Family vacation.

If you follow Treyton’s Posse on Instagram or Facebook you already know that the Arnolds took a family vacation to San Diego. Our oldest two girls are both in high school and with all of the “AP” and “Honors” classes they cannot afford to miss much school. However, they had winter break so we took the opportunity to flee from the unusually harsh winter we have been having in Michigan. (If you missed those images you can also find them on Flickr.)

I have some mixed feelings about using the term “vacation” when I talk about taking a trip with the entire family. Vacation implies some type of rest and relaxation so you would think that you would return feeling rested. That is rarely my experience. I could blame it on my two youngest kids (Lindyn 9 and Treyton 4 1/2) but Bailey and Taylor (16 and 14) add their own dynamic to the situation. Also, we have two distinct groups in our family because the kids’ ages. That was not something we planned; we welcomed each of our babies into our family when God blessed us with them. It was His timing.

An afternoon conversation.

Before getting married I had the opportunity to go on several vacations with some friends and there families. These were good experiences and provided the opportunity to see how other families function. One of the things that really struck me was when parents would go out of their way to fulfill the individuals desires all of the time. Now please understand, I am not criticizing them; if I were, they could find just as much to criticize about me if they wanted. Their approach to vacation worked at some level for them and is part of what defines their family culture.

As we walked back from having lunch on the pier, Leigh Ann and I willingly let the four kids walk ahead of us. We didn’t really plan to do that but we both kind of slowed our own pace which helped to create some space between the kids and us. As we walked Leigh Ann and I talked about the challenge of finding activities that all of the kids enjoyed. It seems like it is fairly easy to please one or two of the kids and at times a third but rarely are we able to please them all. The struggle to find balanced activities weighs on both of us but it is really difficult for Leigh Ann. I think part of the reason for that is her role as mother but it also has to do with personality and her own story.

However, this vacation has really helped me to see something that such an approach may be missing. By working so hard to make sure every individual in the family is doing exactly what they want to do at any given minute I am robbing them of the opportunity to learn a valuable lesson. It is a lesson that “only children” can struggle to learn. It is about putting others first, having a servant’s heart, and just being flexible. It is a lesson about first learning to listen and understand before trying to be heard and understood. It is about being part of something bigger than self. There is a lot of value to learning how to function in a group. This includes being exposed to new things, learning new skills, and simply enjoying the company of others to name a few.

As the two of us walked I tried to explain these thoughts to Leigh Ann. She agreed but we also were both aware that ideas are one thing and reality is often another. As parents we get tired. When we are tired we can drift toward the path of least resistance. The path of least resistance is not a great place to try to teach lessons. In cases like this it sure would be nice if the thought was really what mattered because we were all over that thought!

 Making it about Down syndrome.

It didn’t take long for my mind to wander and see a correlation between these observations about vacation and lessons that could be applied to how disability impacts family, especially siblings. As parents we are acutely aware of the potential negative impact our other kids may experience because Treyton has Down syndrome. It is not something any of them have ever expressed but it is a real fear we have.

There is a lot of information available in our community regarding Down syndrome and the sibling experience. I have done some reading on the subject and participated in a two-day webinar covering this topic. I am thankful for this easily available information from the many resources serving our community. But along with these vacation thoughts I am starting to see that parents can get too focused and caught up with worry about it. It is pretty natural for us parents to get caught in the cycle of never-ending hypotheticals. “What if Treyton didn’t have Down syndrome, would we have more time for our other kids? Would life be easier for them? Could we do more for them? Would they have less responsibility?”

Sure, having a child with a disability requires more time and if my boy didn’t have Down syndrome I probably would be able to spend more time with the other kids. Life may be easier, I could do more, and the kids may have less responsibility. But would that be better? How do you define better?

We all want what is best for our kids. We don’t want them to endure unnecessary hardships or have bad experiences. We love each and every child but also realize that the extra-chromosome from the one child does impact the other. Some work very hard to make sure their other kids never feel the impact in their own lives. I understand why parents work so hard at it.

But maybe we need to look at it from a different angle. Our kids have something were never had, they have the opportunity to grow and learn in ways we didn’t have the chance to do and neither do their friends. Our kids have been given a gift to see a richer, deeper, more meaningful life. Maybe instead of trying to isolate them from this reality we should put that effort into helping them realize the gift that has been handed to them. To use the gift and not waste it.

You see, when you meet an individual that has Down syndrome you need to consider yourself lucky, like you found a four-leaf clover.

Our cloud of chaos.

Lately life seems to be moving at the speed of light. We’ve had a lot of snow here in Michigan so school has been cancelled quite a bit; that throws a wrench into any type of normalcy we strive for in our house. Treyton is beginning to use more spoken words to communicate than he ever has before. He is also starting to join the rest of the family on the potty-training bandwagon. Those are some very exciting developments for us!

Trey’s mom and I have also been doing a lot of thinking about (and possibly reconsidering) our decisions regarding school for him. In general the boy is stinking smart, yet, there are some areas where he does  need a little extra help. It feels a little like being caught between worlds. We know that Treyton is capable of a lot and want to continue to develop – we really don’t want people to underestimate him because of his diagnosis. On the other hand it is hard to see him struggle with things that some kids take for granted. (These issues weigh extremely heavily on his mom.)

A fork in the road.

On top of all of the “normal chaos” in our house I recently reached a fork in the road of my career. After almost twenty-five years of working in the family business started by my wife’s grandfather I am heading out on my own. I am happy, excited, nervous, scared, you name it!

This was not a decision that I made lightly. Running my own business is something I have thought about for a long, long time. However, the fact that I have a wife and kids has always made me a little timid. I don’t mind taking the risk for myself but I hate the idea of putting my family into that position. And, like so many other things, having a child with special needs raises the bar and amplifies that risk. I have worked diligently to minimize as many of the potential risks the best I could. I also believe the potential payoff will be there and be worth it.

After twenty-five years life gets to be pretty consistent. All of that has changed now. I am searching for balance again which is one of the reasons it has been so long since my last post. My focus right not is to keep pushing forward the best I can with this blog. I am enjoying going to the office once again; it has been a long time since I looked forward to work. You may start to see some guest posts during this process as well. Please hang in there with me while I figure things out.

wenty-seven years ago today a little boy was born; he was named Robert Ethan Saylor. At that time there was no way to know that exactly 26 years and 3 days later that same little boy would die at the hands of law enforcement. His crime? Nothing. He was suspected of walking into a movie without paying but that was later proven to be untrue. Even still, is the price of a movie ticket reason for someone to die? Ethan, I never had the privilege to meet you but you have changed me, forever. And because of that I ask that anyone reading this raise their class and give a #Toast4Ethan.

Candle in the wind.

If you have been reading this blog on a regular basis you know that I like music and Elton John is an important part of my music history. As I thought about Ethan and how his life tragically ended at the age of 26 I immediately thought of Elton John’s song A Candle in the Wind that he wrote as a tribute to Marilyn Monroe. The song was later adapted in honor of the tragic death of Princess Diana and I believe it applies to Ethan.

I don’t know much about Ethan but there is one story his mother told that I really love. At one point she was in the hospital and Ethan came to visit her. He loved his mother very much and did the only thing he could do which was pray to God. Ethan prayed in earnest, he poured his heart out to God and everyone that was near his mom’s hospital room. You see, Ethan felt the need to take a shower and as he showered he sang. Ethan sang what was on his heart. He sang his prayer to God, a prayer of healing for his mother.

Ethan’s death scares me.

I was introduced to Ethan through news reports as well as the writings of fellow bloggers. They all talked about a 26 year-old man with Down syndrome that died after 3 off-duty police officers wrestled him to the ground because they believed he entered a movie without paying for a ticket. They ignored the tell-tale physical markers that all point to the fact that the young man had Down syndrome and therefore had a cognitive disability. The more details I uncovered the more angry and unsettled I became.

One of the more unsettling aspects for me was how little news coverage Ethan’s death received. Think about how much news coverage is often given when there is a different skin color involved or gender identity or religion. I am not saying those are not important, they are, I am saying that the death of someone with a cognitive disability should be every bit as important and the apathy surrounding Ethan Saylor’s death is terrifying!

What about my son?

I am not going to lie, right or wrong, a big reason I am so concerned about this is that it could be my kid someday. Jisun at www.kimchilatkes.com refers to this as “selfish advocacy.” She is not condemning this sort of thing but rather explaining its reality.

I wear a survival strap on my right hand. The strap has a blue and yellow ribbon on it and was designed to honor Ethan Saylor. I wear it to remember Ethan but also as a conversation starter. I want people to notice it and ask me about it. I want to tell others about Ethan both to honor him but also to help pave the way for my son. I don’t want Treyton or any other person with Down syndrome to suffer the same unjust and violent death.

When I tell others about Ethan I do want his life and death to be honored but I also want to prevent the same thing from happening to my son, I don’t know how parents move on from losing a child. I know they do but it seems like such tough loss. There is another reason as well. I want to be able to look my son in the face and let him know that I am working to change the way the world sees individuals with cognitive disabilities. That I am working to create a world where every life is valued.

So today I give this #Toast4Ethan. I give a toast to his life that ended too soon and ask all of you reading this to never let his death be in vain. We cannot change what has happened but we can let what has happened change us.

I have always loved the “year in review” type radio and television shows that are popular around the new year. Sometimes there are things that seem like they happened several years ago and then there are others that you have already forgotten about.

Instead of trying to write a post about all of the things that went on in our lives I thought I would put together a string of images that would tell the story for me. It was not easy narrowing down the images that I would use, there was a lot that went on in 2013 – Treyton was a busy man!

What I hope you can see in this video is that having a son with Down syndrome is not a problem. Look at the fun we had. Look at the joy Treyton brought to us! Maybe you just learned that your baby has Trisomy 21, I hope you can see that Down syndrome is not what you thought it would be. Life is good!

Considering the collateral damage.

The night Treyton was born Leigh Ann’s aunt brought our three girls up to the hospital to see their new baby brother. I don’t remember being concerned about telling them that the doctors thought Treyton had Down syndrome. However, a couple of months later I had tears come to my eyes while reading about another parent’s story of telling her kids. At some level I must have been concerned about the impact on my kids but didn’t realize it I guess.

As our family got back into the groove of daily living with a new member everything seemed fine in the world of siblings. Our two oldest girls were at a fairly independent stage in life but Lindyn was not. We have worked hard to keep a good balance of including our kids in the Down syndrome world but also not burying them either. Yet there is always a question in the back of my mind, “Am I being the best parent I can be to ALL of my kids?”

The sh!% of life.

In preparation for the Christmas holiday, our youngest two kids had parties planned in their classes. However, the weather did not cooperate and school was cancelled. Lindyn, being 9, had conflicted feelings about this because she was happy to skip the school aspect but bummed about the party. Treyton on the other hand really didn’t have a clue (it must be nice being 4). Yet Treyton’s teacher did recognize that some of the kids may be disappointed so she sent out an email and offered an open house type party for the following Monday. I thought that was pretty cool.

When Lindyn heard about the open house she immediately started asking to go along, she had been wanting to see Trey’s class for a while now. While I was at work that Monday, Leigh Ann took the two kids to the open house. The teacher had crafts for them to do as well as a small gift. At the table where Leigh Ann and Lindyn sat working on a craft with Treyton also sat one of Trey’s classmates and his mother. As Trey worked the glue stick over the piece of paper both Leigh Ann and Lindyn heard the little boy say this, “Mom, that is Treyton. He can’t do anything right.”

Keep in mind that I was at work during this party and learned about this incident when I called Leigh Ann with a Christmas question. I could not get ahold of her earlier so I asked where she had been and when she told me I cheerfully asked how it went. I had no idea until the tears began. They were tears for Treyton, for herself, and for Lindyn. I asked her what she did in response (I had a lot of suggestions at this point!) and she handled it well. She simply looked at the little boy and told him that Treyton good do a lot of things like write his name but that some things were just harder for him.

I haven’t personally asked Lindyn about this because I don’t think it is something she wants to talk about. She is proud of her little brother and was confused by the insult because in her eyes he is really smart. Lindyn and Trey are really close and I am sure that will only increase as they grow older together. It is something Leigh Ann and I are both thankful about as well as concerned.

A window into the world of siblings.

I am the youngest of three children, all of us are “typical.” As a result I can never truly know what it is like to have a brother or sister with Down syndrome or other special needs. I can tell you what it is like for me as a parent and try to help you on your journey but to know how life with Treyton is impacting my three girls is out of my reach. That is actually a scary thought, it is a real unknown for a parent.

When I read the email from the NDSS stating there would be a webinar about siblings and Down syndrome I made sure to block off the time on my schedule. I didn’t really know what to expect as I didn’t have any details about the webinar. It could be a professional like a psychologist talking or other parents or who knows? I also didn’t know exactly what I hoped to get out of the experience. I guess maybe I was hoping to get some type of confirmation that I was doing the right things for my kids.

Recapping the sibling journey.

The webinar was broken up into two hour-long segments, two-days apart. Each segment was presented by an actual sibling of a person with Down syndrome, someone who has lived the role. The two different presenters offered some common threads but their stories offered different perspectives.

Anne Marie Cerniglia

On Monday 24 year-old Anne Cerniglia provided her story. Anne is the second of three girls; her younger sister Yvonne was diagnosed with Down syndrome. Anne is a nursing student and believes that having a sister with a disability like Down syndrome has helped to make her into the person that she is today.

Anne’s earliest memories of her sister involved therapy sessions; she is thankful that her parents allowed her to be involved. Growing up Yvonne and Anne had a fairly typical sibling relationship. One with highs and lows, good times and arguments. They did a lot of things together but also needed their own space. Anne said she understood why her sister needed so much of their parent’s attention but also stressed the need for parents to balance time among all of their children.

Marianne Marts

Marrianne Marts is the youngest of six children. Her oldest brother Joe, of whom she is now guardian, has Down syndrome. Her story was one of deep love for her brother yet there were many challenges. It was a story that involved a lot of concessions to her brother’s desires and there were times that she found it difficult to explain her his behaviors.

To say that having a brother with Down syndrome helped to shape who Marianne became as an adult seems like an understatement. She became a special education teacher as well as an adult disability advocate. Ms. Marts is a certified trainer and chose to become the guardian and primary caregiver of her brother. Compared to the first part of the webinar, Marianne had a significant focus on being an adult sibling.

A few suggestions.

I enjoyed hearing the stories that these women shared but I was really looking for something tangible I could take away from the webinar that would help me be a better father. I listed some of those “tangibles” below. Like everything else, there is a lot that depends on the specific situation.

• Do you best to balance time and attention among all of your children.
• Recognize that siblings take on more responsibility and share many of the parental concerns.
• Acknowledge that siblings have a challenging role.
• Provide space and privacy for the siblings.
• Ask and don’t expect siblings to be involved.
• Discuss future with the siblings as they will most likely be the caregivers. Siblings know this whether you talk about it or not.
• Offer opportunities to participate in therapy and meetings.
• When there are multiple siblings the responsibilities may not be spread evenly. Help them work through those issues.

This list is far from complete and even if it were, there are no guarantees. As parents we have been given children that, regardless of an official diagnosis, all have special needs. Our job is to adapt to each child’s needs as best we can. We will make mistakes. When we do it is important that we admit we made a mistake. Once we do that we can learn from them and move on. Our kids love us and their siblings. They don’t have any illusions that we are perfect and are pretty resilient. As long as we are willing to admit our shortcomings and learn from them I think things will work out alright in the end.

I have never struggled with the fact that my son has Down syndrome.

If you are familiar with my story and how Down syndrome came to be a part of my life you know that I have never had a difficult time with the fact that my son has a disability. I don’t want to give you the impression that my acceptance of my son’s Down syndrome diagnosis is because I am such a “noble person.” No, had I first struggled and then come to terms with it I may be able to talk about nobility but that is not the case for me. I simply looked into the eyes of that little boy the nurse just handed to me and knew right there that this was my boy and I loved every aspect of him just like I loved every aspect of each of my three daughters.

I realize that I am an odd-ball when compared to most parents of children with Down syndrome. Just the other day I had someone tell me they could not believe how I adapted to the diagnosis. If you have had a hard time with some aspect of your child’s Trisomy 21 there are a lot of people who have that in common with you. Parents, especially new parents, need to know it’s okay – struggling with the diagnosis has nothing to do with how much you love your child. I know you love your child.

My wife has had a hard time dealing with some aspects of what it means to have a child with Down syndrome. The two of us have come at this from two totally different perspectives; at times our different views on Down syndrome has been difficult on our marriage. In fact it was just the other day (4 1/2 years later) that my wife said, for the first time, that she really feels like she would never want another child, one that did not have Down syndrome. She is and has been a great mom for Treyton and there was never a question love, but there were times when some of the realities that come with the diagnosis weighed heavily on her.

If you let fear drive you even a lamb is scary.

I usually leave for work before Treyton is awake but occasionally he decides to start his day a little early, this morning was one of those days. Instead of rushing out the door I decided to take a few extra minutes and read some books with him. One of the books he picked was called “A Fly Went By” written by Mike McClintock. It is a fun book, one that you can take at face-value.  I am pretty sure the author did not intend for the story to have a moral but I think there is one that applies to Down syndrome.

The book starts with a fly going by that is scared and trying to escape a frog. However, the frog is not really chasing the fly but it is trying to get away from a cat that is trying to catch it. If you are quick you may have already guessed that the cat is not trying to get the frog but is instead trying to flee from a dog it thinks is chasing it. The list of scared creatures goes on and even includes a man carrying a gun. The man is scared and running away from a sound that seems to be following him.

The reality is that the man was scared and running away from a little lamb that was coming to the man for help because it had a bucket stuck on its foot. A little lamb is about as innocent and harmless you can get not to mention this one needed help. However, all of the characters in the book allowed their fear and ignorance to drive them and panic spread like a fire. I think that is the same thing that happens with Down syndrome. People are ignorant and this lack of knowledge makes it very easy to be afraid of raising a child with Down syndrome.

Please join with Treyton’s Posse as we work to spread this message:

Down syndrome is like a little lamb, nothing to fear.

I don’t know where I’m going but I sure know where I’ve been.

Can you name that song? Maybe the group that sang it? Think eighties hair-band – it was released in 1982 and then again in 1987 to be exact…..The group is Whitesnake and the name of the song is “Here I Go Again.” I was 14 years-old in 1987 and worked at an ice cream parlor that summer. I had a moped that I rode around and thought I knew a lot about life.

I have always loved the melodramatic chorus to this song, it says: “Here I go again on my own, goin’ down the only road I’ve ever known, like a drifter I was born to walk alone an’ I’ve made up my mind I ain’t wasting no more time.” I remember singing that song at the top of my lungs as I cruised the open roads at 30 mph on my moped.

Being able to say, “I am thankful for Down syndrome,” has been a journey; one I never intended on taking. I had no idea where I was headed either but now that I have a few years of perspective I have found some things that cause me to give thanks. I anticipate that this list will change over time as new circumstances and growth opportunities present themselves.

The list of Down syndrome thanksgiving.

I am thankful for Treyton. Although Down syndrome did not give me Treyton I have never known him without Down syndrome in the picture. I love life with Treyton and would never want it any other way.

I am thankful for a new understanding about what it important in life. Because Treyton’s future is something other than “the norm” we have had to reevaluate and re-prioritize a lot of things. It sure seems like I was missing out on a lot before.

I believe that having a child with Down syndrome is helping me to be a better parent to all of my kids. It is a challenge to balance my time and focus between all four children but my skills are improving and my understanding of the individual needs of each child is growing.

I am thankful that Down syndrome has helped me to appreciate the many small blessings that happen each day. Because Trey is on a different development schedule I have learned to be thankful for the small improvements that take place on the path to bigger achievements.

Having a child born with Down syndrome has opened my eyes to the way society often discriminates against those with the disability as well as other disabilities or anything that is not considered “typical.”

I am thankful for the opportunity to meet new people both in person and in the blogosphere. This is a chance to be part of something bigger than myself and my own little world

Down syndrome is helping all of my children to become better people, to see a much bigger world than I ever did at their ages.

The reality of the situation.

I had no idea that I was going to have a son with Down syndrome nor what such a thing would involve. I guess I am also thankful that I did not know ahead of time because I had the opportunity to meet my son without prejudice. I was able to look into Treyton’s eyes before my ignorance of Down syndrome could influence me.

There is a lot in life that we cannot control; however, the one thing that is always within reach is how we respond. Not every situation is equal – some things are much more difficult than others to deal with but we always have a choice. I don’t know what tomorrow will bring and given recent events I don’t expect things to be too easy. So for now, I am going to focus on this gift of Down syndrome I have been given.

The last few weeks have been the type that you don’t want to repeat, they have been full of challenges from all aspects of life. That is one of the challenges of raising a child with a cognitive disability like Down syndrome. The issues that we face in our jobs, families, etc. don’t lessen just because we have the extra challenges of raising a child with a disability.

Focus on the next step.

A number of years ago while on vacation I picked up a book at the Discovery Store call Deep Survival. I was looking for something that would be both interesting and easy to read while on vacation. The book delivered on those expectations but there have been some things I read in the book that have stuck with me. In fact, over the last few weeks I have been doing a lot of thinking about the book.

One of the things I remember most about the book was that when you are in a dire situation, you are lost and striving to stay alive, don’t allow your mind to wander too far into the future. In order to maintain your sanity which will give you the best chance at staying alive you need to focus on the next step and simply work your way through your daily routines.

That is where I have been lately, I have been focusing on the daily routines that create a type of pattern to follow as I manuever through my personal chaos. I certainly have not been functioning where I want to be but I have been able to function. I have been wanting to write but have really struggled to develop any cohesive thoughts, they all seemed to run together. However, there is one story that did rise out of the swirling mental mess that needed to be shared.

Making a difference on the other side of the world.

A couple of weeks ago we had a parent-teacher conference for Treyton at the school where he is a part of a “typical” classroom. It was a nice experience from the aspect that it was not nearly as formal as an I.E.P. We also got a great report about Treyton’s progress which always makes thing a lot better. But it was during that meeting that we learned about how Treyton is already making a positive impact on the other side of the globe.

I knew that this school had a Spanish immersion program but during that meeting I learned they also had a Mandarin immersion program. And, because of the Mandarin program, the school had some visitors from China that toured the school. As the visiting educators moved throughout the school they ventured into Treyton’s class.

I don’t have much personal knowledge of the family planning policy that is in place in China other than it is a way to control the population size and it is common for families to only have one child. The natural result of a policy like is an increase in the pregnancy termination rate when there is an indication of something like Down syndrome.

As the visitors observed what was going on in the classroom we are told they commented, through their translators, on how Treyton was learning the same things as the rest of the kids. They also noticed that the other kids were not scared of Treyton either. (To be honest that kind of pissed me off because he’s my kid and not some scary freak but then I realized it was their inexperience that lead to that observation).

Simply by us choosing to send Treyton to a typical preschool and allowing him to be himself, Treyton was able to paint a picture of what could be for individuals with Down syndrome. Treyton’s mom and I have always felt that God had something special in mind for Treyton’s life but we never thought it would happen so soon! We are also extremely thankful that this teacher shared the story with us, it was good for us to hear.

The moral of the story.

I am not sure if there really is a moral to this story or not but if there is it is going to be this. Live your life the way you are meant to live it. I don’t know what that is for you or what that looks like because it is different for everyone. The key is to be true to yourself. If you do, people will see how normal life is with and without Down syndrome. It is the butterfly effect at its best. Your choice to live life without shame or fear could be the start of a revolution that leads to a world where individuals with Down syndrome have the opportunity to grow and develop without prejudice.

The rookie experience.

If you are a first-time parent you can relate when I talk about doubting your parenting skills and decisions. If you’re more of a veteran parent you may have gained enough experience and confidence that your old friend doubt doesn’t come around as much anymore so try to think back and get a feel for what I am saying. Prior to Treyton’s birth and the introduction of cognitive disability to our equation we had been moving along pretty smoothly and confidently.

As I wrote a couple of months ago we decided to send Treyton to both a special education preschool and a typical preschool. We’re splitting time between the schools because we don’t want to swamp the kid; on the days that he goes to his “typical” preschool in the morning he does not go to his other preschool in the afternoon. Last week both schools had special activities so at times it seemed like our plan was backfiring but we did get a good opportunity to see him in both environments.

Due diligence.

The choice to send Trey to both schools was not made lightly. Last year he went to school the entire year in our district’s early childhood special education (ECSE) program. It was a good experience allowing him to grow and develop. Toward the end of the year his teacher expressed to us that Treyton would benefit from being surrounded by kids whom could provide good models for him to imitate. We weren’t to surprised but it was nice to have the confirmation from a professional. As is often the case with Down syndrome, Treyton still had areas of deficiency that merited continued involvement in the special education program (speech therapy being a big one) so we went for a hybrid approach.

Prior to the end of school last year my beautiful and diligent wife began inquiring about the new school. After she expressed interest the school sent a person to evaluate Treyton in his special education classroom so they could get a feel for his chances of success in that new environment. I don’t recall getting a summary of the evaluator’s notes but it was determined that Treyton had the option to attend the typical preschool. The “typical” preschool that we sent Treyton to is at a private school with a very good reputation for inclusive education all the way through the 8th grade which is the highest grade at the school.

A couple of weeks ago, just before the start of school, I had the chance to talk to Mrs. D, Treyton’s teacher at his new school. I learned that part of the reason they had such a good reputation for inclusive education was that they had a strong resource-learning staff and Treyton would be sharing a special aid (as needed) with a friend of his that also has Down syndrome but would be in a different classroom. That conversation put me at ease about Trey starting the new school. Not because of the aid but more because they acted excited to have him and had put some thought into what it would take for him to succeed in that classroom.

Staying informed but not hovering.

As Treyton began school this year we had the option to feel at peace knowing that  we did everything possible to ensure that he would be in environments that provided him the opportunity to learn, grow, and experience success. At least we were pretty sure we had done everything we could and we were pretty sure it was the right mix of growth opportunity and success. We did everything we could, didn’t we?

If you are familiar with Love and Logic parenting you about “Helicopter Parents”. It’s a parent that is always hovering around their child so he will never feel any negative effects resulting from wrong choices or irresponsible behavior. An example of a helicopter parent is one that swoops into the rescue every time their kid forgets to bring his lunch to school. Instead of letting the child experience mild hunger pains once or twice and learn the consequence of being irresponsible the parent will bring the kid his lunch time and time again depriving the child of the opportunity to learn.

I am not a helicopter parent and tend more toward the side of being a “Drill Sergeant Parent” which has its own problems. However, I want to point out that there is a difference in being involved and staying informed about what happens at school and hovering. My wife does an amazing job of talking to the teachers and classroom helpers about Treyton on a daily basis. She is not hovering at all and is willing to swallow her own maternal instincts to allow Treyton to learn important lessons if that will be best for him.

The fact that Treyton is still non-verbal makes it a lot more complicated and difficult for us to get a good “read” on his perspective of how school is going. We ask him about things we know he is doing at school as well as if he wants to go to school and try to judge from his responses how he is feeling about it. We can get a bit of an indication but the process involves a lot of inference so there is always a lot of doubt as well. Leigh Ann will use the few minutes she has as she is dropping Treyton off to talk to the teachers and see him interact and does the same when she picks him up. I am very thankful for her diligence in this area.

A closer look.

Last Monday night was “Dad’s Night” at Treyton’s “typical” preschool. I love things like this because I get the chance to see him do his own thing in his own world. The evening was fairly unstructured and provided the opportunity for the dads (or other special person) to spend time doing different activities with the child. These activities ranged from coloring and crafts to playing with toys and reading books.

I am usually in a zone when I am with Treyton but for some reason I had the sense that we were being watched a little more than usual. I am pretty sure part of this feeling had to do with the fact that I was very aware that Treyton was the only kid with diagnosed special needs so I felt like the other dads were probably aware that there was a kid with Down syndrome in the class and may be curious. During the evening I heard more than one of Treyton’s classmates say to their dad, “That’s my friend Treyton.”

The very next day Treyton was the “Star of the Day” which involved a number of things for him during the class period but also meant that Leigh Ann had to be the parent helper and was able to spend the entire morning in the classroom. She told me that Trey didn’t have an issue grasping the concepts and did great with the “academic” stuff but that he lacked a little self-control. There were a couple of girls playing with the blocks and Treyton kept trying to knock them down. He certainly does have a difficult time fighting those types of urges but I am not sure that is a result of the extra-chromosome. To be fair, he was born into a family where both parents and all three siblings have been diagnosed with at least one type of ADD (I happen to be a combo of both hyperactive and inattentive ADD).

A couple of days later Treyton had a Halloween party at  his ECSE school so Leigh Ann was able to get a feel for that environment and make a comparison (we were already familiar with that school but having the two events so close together did provide a unique opportunity). It was Leigh Ann’s observations from this party that lead to a number of conversations the two of us had about the right place for our boy. Nothing is easy. Our old-friend doubt had come back.

What does the right fit look like?

One of the many things that is not written in the special needs parenting manual that doesn’t exist is how the parent can know they have their child in the right setting. In the regular classroom Treyton is smart enough and holds him own, however, he has some unique physical characteristics and relies on signs to communicate. In the ECSE classroom Treyton’s use of signs is pretty normal and he fits in but may not be intellectually challenged as much as he could be.

Truthfully we are pretty happy with our choices at this point but what about next year or five years from now? I don’t like the idea of Treyton being the “special” kid in the classroom but I also want to help him become the best person he can be. He deserves the opportunity to be challenged and grow. What is the balance?

I think that one of the more frustrating things for us is that with our other kids it seemed like the path was clear. They are typical kids so there future is certain.

WHOOP! There it is!

That’s what hit me as we talked about this. I think we (that is a collective “WE” as in parents in general) think the future is certain for our typical kids. They’re just like us so they will follow a relatively similar path as we did and turn out a lot like us. I don’t know that this is the only reason we struggle but I think it is a big part of it. This is false logic.

The other side of this is that when the doctor tells you that your child has a disability and will require special help we think that it means their future is less certain than kids that don’t need that help. I like the perspective that George Estreich gives in his book The Shape of the Eye. Estreich points out that when you have a child diagnosed with special needs you are actually a step ahead because all kids have unique needs but we just have not discovered what they are for most kids.

Tomorrow and the next day and the next and the next……

Having a child with Down syndrome has helped Leigh Ann and me see some things we would have missed a few years ago as well as seeing things from a different perspective – it has also added a level of concern and worry we didn’t know before. There is a lot to think about for parents of kids with Down syndrome or any type of diagnosed special needs.

As we move forward I can see that it is going to be key to avoid looking too far out into the future. Despite what we tell ourselves there isn’t much we can truly control and even though we have tricked ourselves into thinking typical kids have certain futures the reality is that no one does. There isn’t anything wrong with planning for the future but if that planning begins to overwhelm and drown out the ability to enjoy the present there is an issue. We don’t need to have all of the answers now, we will work it out, together.

DSAIA webinar.

On October 16 the Down Syndrome Affiliates In Action (DSAIA) offered a webinar entitled “The Research Landscape: Update on DS cognition research & ongoing clinical trials.” I decided to take part in the online seminar not because I thought it would be something fun to learn about but out of a sense of responsibility. I attended a similar webinar last year and anticipated that it would be well done but I am not a scientific person by nature so at times it seemed a bit over my head.

The presenter for the webinar was Dr. Michael Harpold; he is the Chief Scientific Officer & Chair, Scientific Advisory Board of the Down Syndrome Research and Treatment Foundation (DSRTF). What I really appreciated about Dr. Harpold’s approach was that he began by laying out the mission that drives everything the DSRTF does. It helped to put a few things in perspective for me. Dr. Harpold stated the mission for the DSRTF as this:

To stimulate biomedical research that will accelerate development of treatments to significantly improve cognition, including memory, learning and speech, for children and adults with Down syndrome.

He went further to say that the research conducted and or supported by the DSRTF was about:

Creating New Opportunities for All Individuals with Down syndrome

• To lead more independent lives
• To participate more successfully in schools & employment
• To prevent additional early cognitive decline with aging & Alzheimer’s disease

Something clicked for me when I heard this. If you are interested you can watch a recorded version of the webinar by clicking on the image of the laptop computer above.

The light came on.

Sitting in my office with the door closed and the phone set on “Do Not Disturb” I listened to what the doctor had to say and tried to take notes. There was some stuff that I let slide by but Dr. Harpold was telling us about a lot of interesting things taking place in the world of Down syndrome research. But something else happened to me. I started to see that the research being discussed was not about changing who Treyton was but about helping him be a truer form of Treyton. I began to feel like my love for the person that Treyton is may have a dark-side to it.

I am committed to giving Trey every opportunity to learn and develop. However, by being resistant to the idea of treatment for Down syndrome I was holding him back. It is not that he had missed any developmental opportunities but more of a theoretical thing. The research was looking for ways to help Treyton’s memory, health, speech, sleep, etc. These are all things I want to help him with anyway!

An overview.

If I only had time to pass along one piece of information from the webinar it would be that Down syndrome research is terribly under-funded compared to other issues. The chart on the right (click on it to make it bigger) was created using the funding data from the National Institute of Health (NIH) and then dividing that amount by the total number of people affected by the issue in the United States. For example, according to the NIH, there was $20,000,000 given to research Down syndrome in 2012. If you divide that amount by the 400,000 individuals living with Trisomy 21 in the United States you see that it works out to $50 per person.

If you look at the list of research areas funded by the NIH you will see that it is a pretty extensive list. I think I counted 239 different topics listed from Acute Respiratory Distress Syndrome to youth violence prevention. It is not about Down syndrome being more important than Autism or anything crazy like that it is about the disproportionate allocation of funds. I have to think that this is a case of “the squeaky wheel gets the oil.” I also wonder if this is an indication of the level of apathy society feels toward our loved ones living with Down syndrome. That pisses me off but I may be part of the problem – I need to ask myself if I am doing everything I can to raise awareness.

Dr. Harpold spent some time explaining how a treatment/drug became available on the market, it involves a 20-year pipeline which I could not believe but there are a lot of steps involved and each has potential areas of trouble that can slow the process down even more. However, the bright side is that today there is more and more research being done on later parts of the pipeline as opposed to a few years ago when all of the funding was focused on the earliest forms of discovery and research.

The discussion helped me to get a better understanding of the connection between Down syndrome and Alzheimer’s disease. I was aware that individuals with T21 were at risk for early onset Alzheimer’s but there is more and research is making connections that may benefit both groups of individuals. Research is also providing a better understanding into the impact the different parts of the brain have on a person with Down syndrome. It is showing that changing these memory systems can help individuals create more associations between concepts, maintain better attention to tasks as well as juggle more than one concept or task at a time. Changing the memory systems can help with binding information which leads to using the information in multiple situations resulting in more adaptive behavior.

Summary.

If you are still asking the question, “Why spend money on cognition research for people with Down syndrome?” here is a list of reasons presented during the webinar. This is not a complete list and it is not in any specific order.

Lastly, there is one statement that Dr. Harpold made that I think provides the best argument for advancing research for Down syndrome.