Riding the bus

How did I get here?

              As I step in and up I feel like I entered another world. Some unfamiliar smells hit my senses as well as people I make eye contact with and many who look away. My son Tim follows me in and we find some seats and I try to talk upbeat about this wonderful adventure on public transportation. I must admit that riding public transportation has been limited in my life except in foreign countries where it is part of the culture. But here I was in a strange culture and feeling unsafe and unraveled. But I am trying to talk up beat and encouraging to Tim as I explain the pull string and we get out our map and watch the route.

              This is one of the many times in my life that I feel like giving up and running away and doing some pity me crying. But that is not a real choice if I love my son. You see, Tim is 29 years old and a great guy! He is loving and kind and gives people the benefit of the doubt. He loves to please and tries hard at all he does. And oh, did I mention he was born with Down syndrome? I love to keep the point to the end when I introduce him as it is not the most important thing about my wonderful son but it affects everything he does!

      

     So where are we?  We are on the bus learning how to get around town so Tim may be as independent as possible, that is my goal and it takes me places I never planned on going. So the first step was riding the bus with him and teaching him many things that our common sense would teach us but Tim needs to hear them from me. Then I let him ride the bus alone.... yes, I was in my car and followed it for the first couple of times. Then we moved up to Tim calling me on his cell phone when he arrived.... and now he just rides the bus. Do I still worry sometimes? of course, that is what mothers do for all their children all their lives.   :-)

     What things do we talk about?  We talk about picking a seat near the front so the bus driver can help keep us safe.  We talk about not giving any one any of our money even if they look real sad and want us to help them. We talk about not sitting by a person who is acting or talking angry. We talk about watching the route so we remember to get off. We talk about not eating on the bus as it takes too much concentration when we are just riding around town. We talk..... and talk........   And so adventures come our way as we live and teach and grown toward our goals of living life to the fullest.

     I am excited to tell you that this is another area where Tim has graduated! yes, he is taking the bus around town and has a schedule in his back pack. yea, Tim! Does he some times still get confused and need my help?  YES but we are headed to great goals and we are smiling!

 

Lifetime goals to keep me focused

      Goals oh the weight of that word!!!
    
Teaching my son Tim takes time.... I don't just mean minutes or hours, and not even days or weeks, but often it takes years to accomplish a goal! I think that is why I find myself and many other parents not making goals as they seem so overwhelming. But each task we teach is a mountain that takes us just going one step at a time and the end is worth it! And so adventures come our way as we live and teach and grown toward our goals of living life to the fullest.

 

                    I want you to know my goals have to stay in the front of my mind always or I would take the easy way out. Or give up! yes, that is right, I often feel like a failure and beat myself up for not doing more for my son. I remember when I was homeschooling all three of my children that I would often end up crying in my husband's arms at night saying, "I didn't have enough time to work with Tim today." Buck would wisely remind me that I would have him for many years after the other two were gone to teach him more. My wonderful husband was right as we are still teaching Tim now at 29 years old! So what are my goals? What long term goals keep me going? These I would like to share with you:

         My main goal is that Tim would enjoy life and be able to make independent decisions for himself. My second main goal is that his brother and sister would love him and be willing to oversee his life when God takes me to heaven. So I am always thinking about what Tim needs to learn to make it easier on Dave and Sarah. I don’t want my son to be a burden to anyone. As I write that word, tears fill my eyes as the pain of Tim being born with a disability remains even after over 29 years. Don’t get me wrong, I love my son and he has enriched my life. But when he asks “Why did God make me with DS?” my heart aches. When he states mater of factly that his goal is to marry a girl who does not have DS and can drive a car… again my heart wants to break. I often go and cry out to God and let the tears flow when Tim can’t see me and then I put on my strong resolve again to be his advocate and strong supporter and the adventures goes on. 

       So right now I am re evaluating my goals as many have been reached or are at least at a good point. Let me share some big ones then I will later talk about them in other posts. 

       Tim needs to be able to ride public transportation or walk or take dial a ride or a taxi so he is able to get around. 

        Tim needs to be able to prepare all his own meals. I want them to be healthy as well as well rounded and things that he enjoys. This includes having weekly menus to last a month with shopping lists to help him not forget things as well as teaching him to not eat but throw away spoiled or expired foods.... wow, the list goes on!

       Tim needs to be able to clean his own apartment and do his own laundry. He needs to be able to cut grass without any prompts in case he lives somewhere he needs to do this. He needs to be able to use the phone. He needs to be able to keep track of his own schedule and be at places on time.

      Tim needs ..........  yes, the list seems oh so often overwhelming so I must pick one some one to work on at a time and make it an adventure!

   What are YOU working on now? What should, could, will we each tackle for the love of our child/relative/friend?

ordering at a fast food restaurant

Here is another picture in my mind that hurts as well as makes me feel proud. We are in a fast food restaurant and we have been working up to this day. We have been going with the goal of Tim ordering on his own. It is not a matter of Tim knowing what he wants but being able to communicate that to the stranger at the cash register. So where did we start? Well when he was 14 we starting finding his favorite items on the menu and writing them down and taking them home and we practiced just those words and phrases until they were understandable by strangers. We had friends who came to visit be our testers. Tim would recite his order and we held our breath to see if they could decipher and tell us what he had said. It was hard work for Tim and he enjoyed it as we would go and “practice” at a restaurant with me by his side to help and correct. We worked through all the little questions that you are asked when you place an order; have you ever counted them!

              Back to that fateful day, I had butterflies as I wondered if he was ready but I had to push him if I wanted to help him be more independent. We arrived at his favorite place and I placed a $10 bill in his hand and told him to go get in line. Like a deer with headlights in his eyes, my son was frozen with fear. Fear of being rejected, fear of not being understood; fear of being made fun of….  But I loved him and my goal for him is independence I reminded myself as I wasn’t sure how to react. “No, I can’t” was his heartfelt cry. I wanted to leave and forget this stupid idea as I was scared too. But I looked at him and said he had to do it or we would not be eating out. “OK, we go home now” was Tim’s response. I stood a long moment getting my resolve strong. “No, this is your day to be successful and I know you can do it”, I heard myself say with no real conviction in my heart as it could really depend on the cashier as to how willing she would be to help my fragile son be successful. I stood with him in line and he was feeling better. When it was his turn, he looked up at me and with the strongest smile I could muster I told him he could do it and walked away to “hide” from the employee’s eyes. I am sure many that day felt I was mean and heartless to both my son and the stranger trying to take his order. I too felt mean and hard but I had to remember my goals for him and that I won’t be around forever to do for him. Besides he feels such pride when he is able to do things on his own. I stayed hidden until Tim came to find me with the change. He still seemed nervous and not happy and we waited for his number to be called. He left the table alone and returned with the biggest smile on his face as he carried the tray. He had won! We had won a huge battle!

              I want you to know my goals have to stay in the front of my mind always or I would take the easy way out. My main goal is that Tim would enjoy life and be able to make independent decisions for himself. 

         So now I ask YOU, if you are a parent or caregiver or friend, could you help someone become more independent in this area? Should you for  the benefit of your child?  Do you want to? Are you willing to make a plan to get to this goal?  Will you? So start on the adventure or pat yourself on the back and say "Congratulations, we have accomplished this goal!"  

   Tim is now able to go along to a restaurant and order. {I must admit that combos listed with numbers makes it lots easier!}  Let's all keep running the adventure!

"It can't be!"

May 9th my world took a horrible turn.... but for my dear friend it was the death of so much.... she lost her son, who was only 27 years old.... such pain of heart and soul! "It can't be!" was my scream as I talked to her on the phone. Buck and I got into the car and headed to their home praying that the paramedics would revive him. God chose to take him to heaven and left was two grieving parents, brothers, a sister who happens to have down syndrome.... oh, how we hurt for them.... and still do. When you think of them please pray.

So all my good intentions to write weekly on this blog was put on hold while I stood with my friend, just saying that now still brings tears to my eyes. This lost was the start of a flood in my life and I was rocked on my foundations and so I did not feel strong enough to write and now, almost 2 months later... I will, Lord willing, get back on track and be able to write positive things but I felt like I owed you an explanation.  Thanks for listening.