PLAY ON WORDS

Colin has a real collection of words that only he uses  -  we find them very interesting sometimes fascinating:

1. He often get migraine headaches  -  He calls them mind grains!!!
2. He loves to give our dog Max a massage on his paws  -  Colin calls them palms!!!
3. Its more better
4. He says  -  My remembory helps me to remember all the birthdays, anniversaries and special dates in our family.
5. He says novie instead of movie.  Maybe it is a new vie??
6. He calls potatoes  -  play doughs instead.  And if we correct him as we often do, because we are his "teachers", he will say poo taay toooe, stretching the word right out.  He can say it correctly.
7. He says veedeevee for DVD  -  and when I correct him, he says that's what I said, Mom!!!

In his early life as a child, he did have countless hours of speech therapy and bless those therapists as he was one tough cookie to deal with.  Lots of melt downs and those therapists were special and amazing.  He benefited from those classes humongously (did I just invent a word??)  BUT Colin has a mind of his own.  He certainly understands the words, he just can't make them come out of his mouth correctly.  He takes great offense to being corrected and I certainly can understand that.

We are always trying to make him as self-sufficient as possible.  Language skills can be a barrier to getting the help he needs sometimes.  In my quest to let him GO  -  I must remind myself that Colin has a Higher Power and I am not it!!!

I HAVE A LIFE

With the many challenges of having a "special needs" son like Colin, somewhere along the journey, I promised myself that I would have a life of my own.

It is a continuous struggle; its ongoing and at the core of this decision is one of self love.  Simple but not easy.  Some of you will laugh when you hear me say this, because I use this all the time.

The other day, I was feeling kind of blue, down in the dumps and I tried to phone some of my good friends; they were unavailable.  I talked to my Higher Power for a while (the God of my understanding)....  and then of course He gave me the message  -  BE GRATEFUL,  He said.  Ok then, I said; and I took out my pen and paper and started to make a list of the friends I have.  Not just friends, the kind of friends that I would; without hesitation; completely trust with my heart.  We are talking girl friends, not sisters, or cousins, because I also have some amazing family members.  Girl friends.  The list came very quickly and the list numbered 25.  Twenty five close female friends.

How have I come to develop so many good loving relationships??   By having a life.  By having a God in my life.

I believe Colin taught me how to grow up.  I believe Colin taught me to love unconditionally.  I believe Colin taught me patience.  I believe Colin taught me to be of service to others.  I believe Colin taught me that in order to be of service to others, I needed to be of service to me first.  Just as the airlines tell us to put that oxygen mask on ourselves FIRST; if there is a problem on the flight.  Then we can help others around us if necessary.

I make it a priority to take good care of myself.  I golf with some delicious and fun friends.  Dennis and I go to movies.  We go on holidays.  We visit our family.  We visit our friends.  We include our children and especially our grandchildren in our lives.  I go to coffee with my friends, meet them for dinner, go for long walks.  I try to make myself available on the phone for those important chats.

I take care of myself physically.  Attend my dental appointments, I attend my annual medical check ups.  I go to yoga classes.  I go to acupuncture and a chiropractor and wonderful Thai massages.  Take my dog for walks.  

I love the silence of the early mornings for prayer and meditation.  I take the time to pray and meditate.  I have created my quiet place.  I surround myself with people who are winning in life.  People who love, support and encourage me.  People who challenge me.  People who insist on transparency and honesty.  Really???  yes, really!!!

Colin has also taught me to say no.  I have had to say no to him.  He made me do it.  He can be very needy, manipulative and childishly demanding sometimes and in order for him to be fully independent, I have chosen to say no.  I choose to LET GO OF COLIN and say NO!!  Its a complete sentence.  It has made him react very negatively sometimes as you can imagine, but in the end; very good growth for both of us comes of this little word  -  NO!!!  My Higher Power is a great babysitter, better than I am that is for certain.  I have to visualize placing Colin in the palm of my God's hands sometimes and simply walk away.

I have a life, Colin;  and sometimes you simply have to wait or figure it out for yourself.   My self love is calling and I have to answer that call first.  Simple but not easy.

SPECIAL OLYMPICS - REGISTRATION DAY

Colin has been bowling with Calgary Special Olympics for about 24 years now. He loves this. He loves the coaches, sincerely loves the coaches, and he loves all the participants, well some of them he just ignores, but for the most part, I would say the Saturday activity is the highlight of the week.

The annual registration package arrives in the mail about 8 weeks before. Lots of forms to fill out. I cringe at having to fill them all out and I complain about yet again we have to do this in such an archaic way!! Standing in line for hours for a simple check mark on the application form; then another line-up for payment. ugh!!!

Registration day is mentioned almost every day from the day he receives the package. Don't forget Mom. September 4^th, Mom at 7:00 pm, Mom!!! Don't forget. Colin calls me at least once every day and every day he makes sure to mention this. God certainly wanted me to develop patience. I really still need to learn to grin and accept, and to just love him back. Its simple but not always easy.

The day finally has arrived. Colin meets me after work around 4:00 pm and we drive up to the NE part of the city so that we are in close proximity to the venue where registration takes place. We need to be sure we avoid traffic. A great anxiety attack would take place if we were late!!! Getting there later than 6:00 pm would be late. So we go have some supper. I try to make it a positive event for both Colin and I because this is my dreaded event of the year. My whole evening is taken up with this event. So supper at Sunridge Mall where he chooses the food court - Lebanese food. Colin, I ask, why do you want this food?? Because!!! Ok, Have you ever had it before?? NO, but that's what I want.... OK then, we both order a plate. He loves his but is not as hungry as he thought and I wolf all of mine down, it was delicious. Thanks for the idea Colin!!!

We make our way over to the registration venue; we have to park in a separate parking lot as there is already a line-up. We are there by 5:45 pm. It is really hot and we are standing outside waiting for the doors to open. Some very thoughtful people are handing out ice cold bottles of water. THANK YOU!!!

The atmosphere is truly loving. You can't miss it; Colin knows so many people!!! He is friendly and happy - He is usually quite reserved but in this environment he begins very slowly by grinning from ear to ear as only he can. Soon, he is shaking hands with people who are coming to him with hands extended..... HI, COLIN BUDDY!!! complete acceptance and genuine caring!!! This is the boy who used to hide behind me rather than return the greeting.  It continues for two hours, seriously - it takes two hours to get through this.

The doors finally open; it is hot in the building and crowded and noisy and I am wishing this is over when Colin looks at me and says: “Mom, its ok, its almost over” and I suddenly realize, I am here, in the moment, I need to appreciate this moment.... and then I see all of it. The people here are completely at ease with who they are. They accept each other and themselves.  

I met a young girl standing in front of us who was really chatty.... her name is: Joanne, but she prefers to be called JJ. She is a very high functiioning Down Syndrome girl and is here on her own. 25 years of age and such a sweet girl. There is a young Down Syndrome boy accross the way from us who is obviously interested in her and she is doing her best to ignore him, complete with the eyes rolling.  I love it!!!

Colin notices everything and everyone. He does not miss a thing. He is pointing people out to me and people are often pointing him out and grinning. He is truly enjoying this and I just need to stay in the moment. Soon we are at the registration desk amd we are greeted like family. It truly is a part of Colin's family. He is home here!!! People love him here, accept him here. That is very comforting to me. I am so grateful. 

The volunteers are amazing individuals who freely give of their time and energy.  Its simply amazing.  There are also other parents there.  Some of these parents are quite a bit older than I and it makes me wonder how brave they are!!  How courageous and how dedicated.  Do I see that in myself?  I think I am just Colin's Mom and I am grateful. 

Registration is complete for another year. There are promises of updating this process with on-line registration - please lets do that!!! 

But then we would miss this event!! In a way that would be sad.

INSPIRATION WAS IN THE AIR

I came home last night  -  9:30 pm and I was ready for a little quiet time before I retired for the night.  But as soon as I walked in the door I knew that quiet was not going to happen.

Colin our mentally challenged son is in the kitchen and he is "slaving" away at some creation on the stove.  Something was in the air  -  and I knew better than to comment on the mess in the kitchen or the time of day.

I asked him what he was doing and he quickly informed me that he was making tomorrow's lunch for him and Brenda, his special friend.  His face was beaming!!!

It was then that I noticed the look of passion on his face.  He was in the ZONE.  He was the master of his destiny and he loved what he was doing.  I did not want to interrupt this process.  Instead I left him and took care of a few chores around the house and then came back to the kitchen.  He was finished with his creation except for the fetuccine.  I offered to put the water on for that and also offered to clean up for him while he takes our dog Max for a walk.  He gladly agreed to do that and so off he went.  By the time he came back the kitchen was manageable again and the fettucini was almost done.  Colin and I both worked on the final steps and filled the containers for lunch the next day.

He was thrilled with his creation and invited me to taste it several times.  It was VERY good.  

We had Colin staying with us for about 6 weeks and during that time; we saw many examples of his passion at work.  He made many beautiful meals for Dennis and I.

He certainly has champaigne taste on a beer budget, but he somehow makes it work for him.  

A clear example of "do what you love".  

LETTING GO AND LETTING GOD

While living in Regina, transportation was provided for Colin to get to school.  A taxi came to the door every morning and delivered him to the front door of the school, and retuned home at the end of the day every school day. Quite often, he would get home and drop his lunch bucket and knapsack at the front door, grab the leash and take our dog "Willie" for long walks.  He would go for a long time.  (well, for me, it seemed like a long time.)

We moved away from Regina when Colin was about 15.  One of the first things that the new school in Calgary asked was if Colin was "travel trained".  "What is that?" we asked.  Well, they explained that it was a requirement for Colin to use the public transit here in Calgary to get to and from school.  I swallowed hard when I heard that.  I was working full time by then and I had no idea how this could possibly happen.

Another lesson in "Letting Go".  ooouuuuuch!!!

The school explained that they took this project on but that after a couple of weeks he would be on his own.  Luckily our son Sheldon was also going to the same school so both Colin and Sheldon travelled together.   It was a great thing.  Gave me a little sense of security.  Sheldon was by then in the role of being the "big brother".  (Poor Sheldon  -  I am sorry Sheldon  -  so proud of you)

The school provided a teacher aide who would come to our home to pick Colin up and also travel with him all the way home.  The travel training went very well.  Finally, the day came when Sheldon and Colin were traveling on their own together.  One day, Sheldon decided to stay for awhile after school for an event.  He explained to Colin that he should wait for him and that he would not be long.

I arrived home from work that evening to find that both Sheldon and Colin were not home.  They should have been home for at least 30 - 45 minutes before I arrived home.  I started preparing supper and soon Sheldon arrived without Colin.  What???  Where is Colin???  Oh no...  poor Sheldon bursts into tears.  He could not find Colin after his activity, so he thought Colin would be at home.

Sorry, no Colin.

Trying to calm Sheldon, I phoned the school, Calgary Transit and finally the City Police.  Talk about panic and anxiety.  We waited anxiously, what could we do???   Finally after about a very long hour, Colin arrived  -  everyone was crying by that time and very happy to see him.  He dropped his bag and walked past everyone while we asked what happened.  He simply responded "I am too tired to talk about it"  and went straight to bed and slept through the night.  Its one of our funny family stories.

After much discussion over the following weeks, we discovered that Colin decided to take the bus on his own.  He discovered that he got on the wrong bus and decided to simply stay on the bus until the bus made the full circle back to his point of origin  -  where he got off.  He then decided to walk home.  It was about a 25 KM walk.  He has never gotten lost since.  He has mastered the art of traveling on Public Transit.  He travels all over the City of Calgary.  He could travel train anyone  -  I am positive of it.  I believe that he has a photographic memory.  He knows the city very well.

This little skill has given him great freedom.  I try not to think of the situations he might find himself in at certain times such as when he travels home from a late night event.  I simply have to place him in the palm of God's hand, He is the best babysitter, after all.  Colin's freedom and independence are absolutely critical, so I stay out of the way.

Thank you Colin for another lesson.  Letting Go and Letting God is not easy but it is simple and so rewarding!!!

SHOPPING - WITH A SMILE??

Shopping is NOT my favorite activity!!!  I am usually on a "mission" when I go shopping.  My least favorite shopping is when I take Colin shopping.

Colin does not understand how money works (not sure I do either, hehe) If things don't go according to his plan, it could trigger an outburst equivalent to that of a 2 year old having a complete meltdown, complete with kicking and screaming and hitting; yes, it has happened.  I cringe at the thought.  Remember "Rainman"??  Yes, that is what he is capable of.

Shopping with Colin is usually an opportunity for me to hone my negotiating skills and I must say I really suck at doing that with him.  Progress not perfection  -  you have likely heard me say THAT before.  

Friday night, after a long very busy week at work and an especially trying day at work, Colin "negotiated" a shopping trip with me.  This shopping trip was specifically for the purpose of getting Colin a new suit.  Ahem!!!

Colin LOVES to wear suits.  It is an obsession with him.  He truly has "champagne taste" on a "beer budget" and makes it work for him.

Colin actually started the day with his regular phone call to me at 7:30 am  -  he was in the most cheerful mood.  Dennis even commented on it.

I picked him up for our little shopping trip at 4:00 pm. I prayed (I don't always) for patience, enthusiasm, strength and courage and the sense of humor to lighten this task for both of us.

Tonight was a miracle.  The cheerfulness was infectious  -  he found humor in everything.  We needed to get some Christmas shopping done first (one of his favorite things is shopping for Christmas presents).  He came up with some really good ideas for his brothers and sisters-in-law and we were able to get all these things in a reasonable time frame and within his budget.  He found something funny in all the situations....  I am beginning to wonder if someone "fed him something"???

We went into one store to buy something for his young nephews and found just the right thing.  The sales clerk who processed our purchase commented on the "mood" that Colin and I were in.  The sales clerk said a couple times "I don't get the joke" but said it in a way that he knew what was going on  -  it truly was a very cool experience.  This young man could see that Colin was special and he just played right into the "mood".  Thank you God.

Then came shopping for the "dreaded" suit.  Colin tried one suit on  -  tooooo expensive and it did not fit right anyways.  Colin usually expresses his disappointment in a very inappropriate way but he was unfazed by this.  This sales person also saw that Colin was special needs and you know some people are so mature, kind and compassionate and that is what we got from this individual....  AMAZING!!  

The second suit was perfect (how the heck did that happen???  who planned that anyways???).  We went on to find the perfect shirt, tie and pocket pouf.  Are you kidding me???  We got this all done in about 40 - 45 minutes!!!  This is a miracle.  My little Christmas Miracle  -  and the beautiful thing is that it was done with enthusiasm, grace, fun and humor.  God was all around us on this shopping trip.  No,  that does not mean that I am going shopping again tomorrow, unless I am taking my grand kids (hehe).

I will be sure to take God shopping with Colin and I next time; guaranteed!!!

Anybody want to take Colin shopping??

I AM AN AUTHORITY ON GUILT

Well that title might tell you that I am somewhat confident in that statement.  Which I am.  After Colin was born, it is needless to say that I was overwhelmed with feelings, emotions I was not aware I was capable of. As Colin grew and developed so did those emotions and feelings.  As I mentioned before, Colin was very tiny at birth and he spent the first ten days in an incubator.  He was allowed to come home with us about 10 days later.  He basically spent the first three weeks of his life in the hospital.

All the doctors and nurses assured me that he would be fine; he was tiny, but that he would catch up and not to worry.  I really wanted to believe them, but I do have 7 younger brothers and sisters.  I had been around babies and I knew what they did and how they developed.  My self-esteem was not exactly on top of the world, thus I let the "authorities" decide how I should feel about Colin's development.

When he was finally diagnosed as having been brain damaged at birth, it was almost a relief and an affirmation of what I had believed all along.  My intuitiveness was pushed way down then and I did not trust myself at all.  Gradually, the intense feeling of guilt started to creep in.

"What did I do?"  "Maybe I should have taken Colin to a different Doctor sooner."

"What could I have done differently?"

"What if I had not smoked during my pregnancy?"  (of course in THOSE days there was very limited information about what happens to babies when Moms smoke and drink).  I drank and smoked during my pregnancy.  I beat myself mercilessly with this one.

And when memories of the delivery came along  -  I agonized over all the details, wondering if there was something that I did wrong.  I played these tapes over and over in my head.

I heard a good speaker years ago who said that Hallmark should have a card that states "Guilt"  on the outside of the card and on the inside "The Gift That Keeps On Giving".  Its kind of a humorous comment on a very negative topic.  Guilt actually does not give but it certainly keeps on taking.  Its a huge shadow that sucks the energy out of love.  It is cunning and baffling and powerful!!!  It takes away all possibility of self-love.  It gave me permission to wallow in self-pity and to remain feeling like a victim and a martyr.  Many times I felt I was being punished.  How could I have a healthy relationship with anyone when I could not let God into my life??

The best thing I did to overcome this guilt was to do the "WORK" of looking at myself and looking at my life.  It is in forgiving my parents for the perceived "wrongs" that were done to me while I was growing up that I found forgiveness for myself.  This was powerful and very gradual.  The effect has been magnificent and freeing.  It helped me allow a God of my understanding back into my life.

I believe today that I would have missed all of this if I had not been given the gift of our son Colin.  Gratitude had replaced the guilt.  I am a work in progress however, because this is an on-going process.  Progress NOT perfection is what I always say.  Bless my beautiful son Colin!!!