Hello everyone! My name is Betsy Caines. I have been blessed with two natural sons (Caleb 10 & Joshua 6) who have Down syndrome!
The "nerd" name (scientific term) for Down syndrome is trisomy-21. Explanation: we all get 23 chromosomes from mom & 23 chromosomes from dad. So, with trisomy-21 there is an extra #21 chromosome. For more information visit http://dsagsl.org/about-down-syndrome/ . Medically Down syndrome is considered a mutation. When Caleb (now 10) was just a baby Frank and I were joking around saying that when Caleb became a teenager he would be a "teenage mutant"... laughing, so we would not cry, the conversation went from bad to worse.. we decided that he must have some "super powers"... because isn't that what mutants do? Have Super Powers?! Now I have two "mutants"... So what are Caleb and Joshua's "super powers"?!
One challenge that I face is recognizing and nurturing Caleb and Joshua's strengths... We all have likes and dislikes, abilities and inabilities, or strengths and weaknesses. Though it should not be a big surprise... my boys have very different personalities, thus their talents are also very different.
Joshua (my 6 year old) is... shall we say... a "leader" (bossy might be a better fit). He likes to be in charge! He enjoys being the center of attention. If I am not giving him enough of my attention when HE thinks I should he will blurt out, "Mommy, look at you!" Translation: Mommy look at what I am doing! I want your full attention, not just your head nod. I want all EYES on me! I think I am doing something great and I want you to think it is great as well! What cracks me up is that Joshua can get people to do just about anything! He has a plan and Joshua knows how to work it. He often gets Caleb to follow him in his game of "Joshua says"... He will tell you what to do and how to do it (and he is so cute, funny and demanding that lots of people will do what he says!). So my challenge is how do I help develop the positive characteristics and discourage the negative? Joshua's bossiness can turn quickly into bullying. Ironically, I use to worry that Joshua would get bullied, never dreaming he might be the bully... We work at taking turns... We help him learn to share the spot light... We encourage Joshua to praise the accomplishments of others... I believe Joshua has the super power of being IN CHARGE!
Caleb (my 10 year old) on the other hand is much different. He loves people but does not insist on being the leader or the center of attention. He likes to be the encourager! Caleb is the ultimate greeter. He also likes showing physical affection. This can be quite an issue... with puberty knocking at the door his peers are going to be less understanding when he wants to pass out endless hugs. Once the hugging begins it is like the plague - Caleb spreads them to everyone in his path! Caleb's hugs can also have a very magical effect on people. There have been times when he has hugged perfect strangers (despite my efforts to prevent it) and they would just bust into tears! Several just simply stated, "I really needed that..." As you can imagine, I want Caleb to have a loving spirit, but there are some people that I don't necessarily want him hugging... and those who don't want to be hugged! So, then what? How do we encourage him to show love and kindness? How do we teach personal space? We are teaching him to give high-fives and to ask before hugging... We are trying to set boundaries... We are teaching him to use words instead of touching... it is a work in progress... Still yet, Caleb can put a smile on some faces that look like they have not smiled in decades! So, Caleb's supper power is LOVE!
We all been created with unique talents and gifts... So, what's your supper power?
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Wednesday, January 22, 2014
Sunday, May 16, 2010
Good Grief!
We are a family with two biological sons (Caleb-almost 7 & Joshua-3)who have Down syndrome! If this is your first time joining us, welcome! Please feel free to read through past blogs. This blog shares some of the unique challenges that our family faces! Feel free to send an email if you would like to contact me: mom2tri21boys@gmail.com
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
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