Guest Post: Outsider Looking In

The only person I met with down syndrome as a child was Tim, and I don't think I even realized he had Down Syndrome. It was not until I was 24 that I met another individual with Down Syndrome. I met Lina on Halloween. Her family hosted a Halloween Party for our church. I came as a gypsy and Lina was dressed as a princess. She was 21 at the time, but I thought she was maybe 15. I said hello and told her I liked her costume. But after that, I don't remember speaking much to her. I think she might have made me uncomfortable. Uncomfortable in that I wouldn't know the correct way to speak to her or that others would think I was patronizing her if I engaged in a conversation.

Six months later, I found myself in the middle of a medical program and without a home. My roommates, who owned the home we lived in, had an unexpected buyer who purchased the house immediately. Lina's older sister, who was living with her family, suggested I move in with them. I thought she was joking at first. But, considering I needed somewhere to live for just two months, I made the move. 

I loved the family so much that I stayed an entire year. Even when Lina's sister moved back to college, I wanted to remain with the family. Over the course of the year, I became good friends with Lina. Her room was directly across from mine. Every morning, I woke up to her television blaring another episode of Hannah Montana. At night, she'd come in my room and show me her cd's or just say hello. 

I learned so much about her and about myself that year. One of my favorite sounds in the house was her singing at the top of her lungs to Camp Rock. I also watched in amazement as she meticulously prepared the same nightly meal every single day: two hotdogs perfectly garnished with mustard and ketchup. If I could summarize the two things that make Lina happy, it would be Hannah Montana and hot dogs.

However, that would be a drastically unfair characterization because Lina isn't just an individual who goes about her day without thinking and being mindlessly entertained. Behind her seemingly "simple" enjoyment of life is an individual with the same human desires and wishes as my own. When she was lonely at night, she would come in my room for some company. In the morning, she'd go through the things she needed to do for  the day. If the family spoke about her like she wasn't there, she would get upset. When she met one of the guys I dated, she later told me he was cute. After she completed a project, she took great pride in showing everyone her work. If someone didn't let her know of a schedule change ahead of time, she would get upset at the last-minute notification. She cared and worried about the same things I did.

One of the most striking times I had with her occurred when we read "Cat in the Hat" together. We took turns reading pages. On her turn, she came to the word "ship" and had difficultly pronouncing the word. After several tries, she paused and said, "boat." I knew then I had underestimated Lina's mental capabilities. Part of me still wonders how much she understands inside and simply cannot communicate to us.

I now live about 45 minutes from Lina and her family.  It has only been 2 months since I moved from their beautiful country home into town, but it feels like an eternity. I miss them and I miss getting to spend time with Lina. The only way for me to spend time with her is to go there, which proves difficult. We usually go on a short walk together, but anything other than that disrupts her routine. There are so many things I want to do with her and for her, but I find myself hitting the same wall: I'm an outsider. My time with her is limited and I am not her caregivers. Her parents love her deeply and they are the only ones who can decide to make any changes in Lina's daily life. 

So an outsider, what can I do to help? How can I help Lina grow and flourish when I can only spend one night a week with her?

Help I am choking!! 911

This happened yesterday afternoon...


I answer the phone and it is "Star," the director of  HI-GEAR, which is a community based arts and recreation program which takes place after work hours and on weekends through the WATCH day program. Timothy loves this program! He had signed up for a movie and dinner out.


I am shocked at the words, "I called 911 and the ambulance is taking Timothy to the hospital as he is choking on a piece of pretzel."  I tell her to tell Tim I am on my way and will meet him at the hospital. I am in shock and many emotions are flying through my mind as I make my body stop what I am doing and head to the car. First and foremost I pray that God will keep Tim safe and free the pretzel from his throat. I have the thoughts of how horrible it would be to lose my dear son. Emotions of love, care and getting to his side immediately flow fast and furiously through my head and heart.


But I must admit that others emotions are coming too: like failure, because he has done this before and I should have taught him better so he didn't do this again. And the paralyzing emotion of  fear. Is this the start of another season of this happening more often?  Embarrassment that people will judge me as a bad mom. I know this is unfounded, but I want to honestly share my heart in hopes that it will encourage you.


I am reminded of the waves of the ocean and the tide coming in. Timothy learns things like that. He gets a new concept and he and I love the feeling of success then the next day I am talking to him again about the same thing that I thought we had mastered. Letting him fly is not as easy as it was with my other two children. Letting go is hard work! I must remember the progress I see and keep going on the journey. 


So I arrive at emergency and I am hit with questions that turn my stomach about his insurance and who is responsible for him.  "Can't I just see my son?" is what my heart screams but I dutifully answer the questions and then think to mention he is conserved. Not sure why I did it but thought it might get me in sooner.


I open the door and walk in to find Timothy sitting on a stretcher in the hall. He is still suffering but no longer is there saliva flowing from his mouth and the gurgling sound is only faint. I have a flash back to being in the emergency room before for the same thing....get him to relax. So I start talking to him about his day and his ride in an ambulance, about the movie he had started to watch and the nice guys from the ambulance that were writing up the report. Before long he was starting to talk and the perspiration and panic was leaving his face. It ended up being a fun part of our journey in life together! 


But the strange thing is that I was right back at the last wave of this and it felt like yesterday. Just now as I am writing this I am figuring it out and I think it was when Tim was 12 or younger. That would be 17 years ago, I am shocked as I write this, where have the years gone!? But I must be thankful that it has been 17 years since he has choked so bad that he had to go to the hospital and at least 5 years since he has had an episode that I am aware of.  So the truth is positive! Timothy is doing better at chewing his food!  


So what is the next right thing for me today? First, I need to have a learning talk with Timothy about chewing all his food, and about not eating fast when he is hungry or distracted by watching movies. Second, since we have conservator-ship of Timothy; I need to take copies to the hospital in case he ever has an accident that I need to help him make life or death medical decisions. I hadn't thought about that until last night. Thirdly, and most importantly, Timothy has made huge progress in chewing his food and not getting things stuck in his throat!!!  Now on to the next steps in living life to the fullest!  :-)

Introduction: Just Do the Next Right Thing!

Hello to you! I would like to share with you why I am writing this blog... which is a very scary thing for me!

I want to share what I have learned while raising my son, things that I hope and pray will encourage you and push you to work on the "next right thing" with your son or daughter who has Down Syndrome or any developmental disability. 

If you are a parent or caregiver I am sure you have heard these words: "I don't know how you do it! You are amazing." To be honest, I hate those words as it is not true. I just do the "next right thing" as I am sure is true with you as well. (I believe I learned the doing the next right thing idea from Elisabeth Elliot.) We are just everyday people who have been given the responsibility of raising a child with disabilities and challenges. 

It has been and still is hard, there was much fear in the unknown and fear in the big goals. I want to share steps I have taken, little ones that have helped me reach my goals for my son and myself.

My goals for the future: 

• I want to experience the empty nest like my friends. For me that means helping, teaching, training Timothy to be as independent as possible. 
• I have a goal that Timothy would not be a burden to his brother and sister when I am gone. 

These goals bring joy and pain to my heart. I also must admit to you it feels overwhelming at times to be taking on this huge task. Timothy learns and retains things like the waves of the ocean; he learns a new task, I am thrilled and so is he... then he seems to lose it as the wave goes back out to sea and we again teach, train and move ahead ever so slowly.

He will be turning 29 years old in 5 days and I am still teaching, training and learning along with him. The task still feels overwhelming at times but I hope to share little steps in areas such as shopping, talking, banking, riding public transportation and so much more that you too will keep going on this delightful yet uphill journey. I hope we will be able to encourage each other to just do the next right thing!