Welcome back! If this is your first time joining us, Welcome! Please feel free to browse past posts. We are a family with two natural sons (Caleb 7 & Joshua 4) who both happen to have Down Syndrome! Our boys are a great blessing but with great blessings comes great responsibility (or something to that effect)!
I was raised in a "family on the move". We were ALWAYS busy (soccer, gymnastics, track, church groups, Girl Scouts, out door adventures, honors clubs, road trips, and the never ending remodeling of the home stead... you get the picture)! This to me was the picture of a healthy, well balanced family... And it really was just that. I had a very rich and blessed childhood! Naturally I dreamed of this sort of family life (minus the remodeling, of course) for my own children... but with Down syndrome came a few more challenges than what my family faced "back-in-the-day"...
We, Frank & I, have learned (or are learning) the art of simplicity. The way Down syndrome has affected our boys requires us to slow down the pace. In other words, there is no such thing as an "all-day" event. Both boys fatigue quite easily, producing very tired children after an hour or less of any given activity (walking, swimming, hiking, playing). One statement that has become a "staple" during family outing is: "Let's quit while it is still fun!" Our thought is to leave on a good note, before the point of total exhaustion... for a melt down is sure to come (if not several melt downs). It would be incredibly easy just to say, "Forget it! It is too much trouble to take the boys any where!"
But we ABSOLUTELY see value in allowing our children to experience new and age appropriate activities! In the past few months we went on a few new outings. We took the boys to the movies! Once a month a local movie theater offers a special needs showing of a family movie. This means the lights stay on and volume is turned down... Awesome! Frank can not wait to have a "guys night" at the movies with his boys! But this will not happen with out some very purposeful "training". So we will continue these special showings until the boys learn how to set in their seats the entire movie, and how to be quiet... Trust me this will take some time (a few years even), but it will be well worth the effort! The movie went better than expected... however, we did not go out to eat after wards... We ended on a positive note, no need rune that!
We also took our "maiden voyage" to Chuck E. Cheese. Yes, we have been invited to birthday parties held there. But we have always politely declined (Caleb is easily over stimulated by noise and crowds). So, for Joshua's 4th birthday we did a family "party" at Chuck E. Cheese (no friends... we did not want feel obligated to stay if things did not go well). We also choose to go at 4 o'clock in the evening (little, to no crowds on a week day)... They had a blast! Joshua ran ME to total exhaustion! Caleb enjoyed playing a few games, but he and Daddy enjoyed eating pizza and watching the "show". After an hour or so the crowds started to come and the boys become a little moody... so again we left on a good note!
We are not the family that gets-our-moneys-worth when going places... so rarely do we spend much when we do try new adventures. No Six Flags or Disney for us at this point in life... but as the boys grow and get stronger we will add bigger and bigger events. For now we will continue to use the art of simplicity when we are out and about.
Lord, help me to have patience with our beautiful boys. Help me to slow down and have fun! Give Frank & I strength as we help our boys grow to become men. When we have those difficult outings, help us to learn from them rather than give up all together. I know Caleb and Joshua are YOUR gifts to us! Thank for blessing me with such an amazing family!
Monday, April 18, 2011
Thursday, January 27, 2011
Catching up...
Welcome back! Sorry it has been a while... I will explain why... If this is your first time joining us, welcome. Please, feel free to read through past blogs. We are a family with two natural sons (Caleb 7 & Joshua 3) who have Down syndrome.
Life has been a bit crazy for the Caines house hold in the past year! We are going through several changes.
Frank was accepted into the Nurse Anesthetist program at Southern Illinois University of Edwardsville! It is an incredible honor and privilege for him to go back to school, but the program is VERY demanding. As a result, he had to quit his job and focus solely on school and clinical hours.
For the first time sense Joshua was born, I went back to work... very part time at a local day care... Just because I am working out side of the home does not mean that doctors appointment, school meetings, or home duties have slowed down! There are just a few more piles of dishes and a few more stacks of clothes...
This year Caleb has made some great strides! His vocabulary and "conversation" language is blossoming! Now when I say Caleb's name he will answer with a very concise, "What?" Until recently he would not respond or just say no. This is a huge improvement! He is also reading! Yes, I said READING! Caleb has 4 to 5 line "stories" that he can read without any prompting... Amazing! His behavior seems to be calming a bit as well; however, his "calmness" may be a direct result of my "calmness".
I finally humbled myself and talked to my doctor about anxiety! Come on, what do I have to be anxious about (spoken very sarcastically)?! For so long I have lived on pure adrenaline... About the time Caleb was growing out of being "sick" all the time, Joshua was born. Poor Joshua was a bit medically fragile (I hate to even use "medically fragile" because so many kids we know are VERY medically fragile)! But Joshua did keep me busy (feet surgery at 4 months old, followed by casting every week on his feet for three months, at 6 months he had his first set of ear tubes, then that winter he was hospitalized three separate weeks for lung/pneumonia issues, all the while juggling physical, occupational & speech therapies)! My ears turned into super sonic radars... resulting in NO sleep and one very anxious mommy! But rest is so important and I have not had good rest in years! I thank the Lord for anxiety medication that also helps me rest at night. This is the year for me to get healthy, an all around healthy. So, I have also re-joined the gym... I have missed being in healthy shape, plus the child care is included! Bonus!!! Mommy gets some "destress time" (without fear of a cold sending Joshua to the hospital) and the boys get some "social time"... this is going to be a beautiful thing!
Speaking of "good" things, Joshua's ASD (a hole in his heart) closed without repair! No more Cardiology for him! I almost feel bad mentioning this because sooooo many of our friends have children with very serious heart issues... An ASD is nothing compared to what so many little ones go through. But this is also one less fear and one less doctor!
So, more good news... Caleb will be going to summer camp this August. He will be attending Camp Barnabas http://www.campbarnabas.org/ in western Missouri. This camp is a Christian based, high adventure camp for children with physical impairments and/or developmental delays! Believe it or not Caleb will be among the "higher" functioning children. Every child is paired with a volunteer buddy and the activities are "modified" for each child's abilities! I am SUPPER excited for him!
Life is all about moving forward... so we just keep putting one foot in front of the other...
Lord, please help me to continue to "get healthy"! Help me set an example that I would be proud of my boys to follow!
Life has been a bit crazy for the Caines house hold in the past year! We are going through several changes.
Frank was accepted into the Nurse Anesthetist program at Southern Illinois University of Edwardsville! It is an incredible honor and privilege for him to go back to school, but the program is VERY demanding. As a result, he had to quit his job and focus solely on school and clinical hours.
For the first time sense Joshua was born, I went back to work... very part time at a local day care... Just because I am working out side of the home does not mean that doctors appointment, school meetings, or home duties have slowed down! There are just a few more piles of dishes and a few more stacks of clothes...
This year Caleb has made some great strides! His vocabulary and "conversation" language is blossoming! Now when I say Caleb's name he will answer with a very concise, "What?" Until recently he would not respond or just say no. This is a huge improvement! He is also reading! Yes, I said READING! Caleb has 4 to 5 line "stories" that he can read without any prompting... Amazing! His behavior seems to be calming a bit as well; however, his "calmness" may be a direct result of my "calmness".
I finally humbled myself and talked to my doctor about anxiety! Come on, what do I have to be anxious about (spoken very sarcastically)?! For so long I have lived on pure adrenaline... About the time Caleb was growing out of being "sick" all the time, Joshua was born. Poor Joshua was a bit medically fragile (I hate to even use "medically fragile" because so many kids we know are VERY medically fragile)! But Joshua did keep me busy (feet surgery at 4 months old, followed by casting every week on his feet for three months, at 6 months he had his first set of ear tubes, then that winter he was hospitalized three separate weeks for lung/pneumonia issues, all the while juggling physical, occupational & speech therapies)! My ears turned into super sonic radars... resulting in NO sleep and one very anxious mommy! But rest is so important and I have not had good rest in years! I thank the Lord for anxiety medication that also helps me rest at night. This is the year for me to get healthy, an all around healthy. So, I have also re-joined the gym... I have missed being in healthy shape, plus the child care is included! Bonus!!! Mommy gets some "destress time" (without fear of a cold sending Joshua to the hospital) and the boys get some "social time"... this is going to be a beautiful thing!
Speaking of "good" things, Joshua's ASD (a hole in his heart) closed without repair! No more Cardiology for him! I almost feel bad mentioning this because sooooo many of our friends have children with very serious heart issues... An ASD is nothing compared to what so many little ones go through. But this is also one less fear and one less doctor!
So, more good news... Caleb will be going to summer camp this August. He will be attending Camp Barnabas http://www.campbarnabas.org/ in western Missouri. This camp is a Christian based, high adventure camp for children with physical impairments and/or developmental delays! Believe it or not Caleb will be among the "higher" functioning children. Every child is paired with a volunteer buddy and the activities are "modified" for each child's abilities! I am SUPPER excited for him!
Life is all about moving forward... so we just keep putting one foot in front of the other...
Lord, please help me to continue to "get healthy"! Help me set an example that I would be proud of my boys to follow!
Saturday, July 17, 2010
Sack Race
Welcome back! I hope the summer is finding everyone in sunny spirits and good health! If this is your first time joining this blog let me welcome you to our family... we (Frank and Betsy Caines) have with two natural sons (Caleb 7 and Joshua 3) who have Down syndrome. This blog is meant to be an encouragement to those who have children with DS and to be an educational tool for those who are learning about DS. Feel free to read though earlier posts... Enjoy!
Summer is the time for swimming pools, picnics, family vacations, cook outs, and just good-old-fashion-fun! This summer we have dabbled in all of the above....
With the boys out of summer school and Frank knee deep studying (he is in a master's program to become a CRNA), things became... shall we say... stressful at our house. Despite my efforts to swim the boys into total exhaustion, if they knew Daddy was home all was a loss. So, I pack our bags and the boys and I headed to my home town of Grayson, Kentucky (very beautiful place to visit by the way... wonderful state parks... rolling heals... trees... great hiking...). Daddy could use the quite house and the boys LOVE seeing the grandparents!
Despite swearing last summer, "I will NEVER do that trip with the boys by myself again!" Here I was by myself with the boys, DVD players running, van pack, travelling east on Interstate 64 for the long 8-10 hour trip (depending on how many stops we need to make). The perks for Frank seemed to out way the stress. We arrived at 1a.m. on Sunday morning. Because it was the 4th of July weekend, the boys and I went to the church picnic with Grand mommy (my mom). To be quite honest I was dreading it a bit... I was still wiped out form travelling and Caleb can have real issues in strange, loud, crowded places... and this would be all of that and more (100+ heat index)! But my fears were ill-directed.... The boys did rather well...
Grand mommy and I tag teamed it! She hung out with the boys as I got some good all-American hot dogs. Then I fed the boys while she got the sides. We both shoveled food down just in time for the boys to want something to drink. We gave a few hugs , exchanged a few. "How are you doing?"'s But all the while keep an eagle's eye on the boys...
As Mom I always have this nagging fear that my boys won't make friends, or that they will be picked on by other kids; yet, I want them to be independent individuals. This combined with other physical and social quarks we have not tried any organized sports. We go to the swimming pool, but that is not a team sport nor dose it require the boys to wait turns... But, what is a big picnic without some fun games?! They called for all sack race runners to come to the starting line... we watched as a small group of kids hopped down the grassy stretch. Once the kids were done they returned to their parents, but Caleb's gaze never left the burlap sacks. He casually but very purposefully started walking toward the vacant starting line. My first reaction was to yell at him to come back over to his seat... but I didn't, instead Grand mommy walked with him. Without any prompting Caleb pick up a sack, and in his own time and in his own awkward way, got that sack on & started jumping! I stood in total amazement...
"My Caleb just figured that out! MY Caleb! All by himself!" For kids with Down syndrome nothing comes easy... He has had therapies to teach him to do EVERYTHING! He still receives Physical, Occupational, Speech, Behavioral, & Music Therapies during the school year. We have had to literally teach him everything! Caleb watched what the other kids did... wanted to do it... and figured out how to do it himself! Totally amazing problem-solving-skills! And to beat all, this is a very age appropriate activity! Another struggles I have as a parent is seeing other kids mastering activities that Caleb (and Joshua) are unable to do... But Caleb was standing before me jumping his heart out in a potato sack! "My Caleb is growing up!"
I had one of those moments of peace... Caleb is growing up...he will get there... he will be potty trained... he will dress himself... he will carry on a conversation... he will... he can... he is able! Like this sack race, growing up is done in Caleb's own way... it takes a bit longer, it's done a bit differently, often it's a bit awkward, and is finished when he finally gets there! I just have to be patient...
Lord, thank you for creating Caleb and Joshua just they way they are! Thank you for have patients with me even when I seem to run this race at my own pace and a bit awkwardly... Help me to hear your cheering voice in the crowd!
Summer is the time for swimming pools, picnics, family vacations, cook outs, and just good-old-fashion-fun! This summer we have dabbled in all of the above....
With the boys out of summer school and Frank knee deep studying (he is in a master's program to become a CRNA), things became... shall we say... stressful at our house. Despite my efforts to swim the boys into total exhaustion, if they knew Daddy was home all was a loss. So, I pack our bags and the boys and I headed to my home town of Grayson, Kentucky (very beautiful place to visit by the way... wonderful state parks... rolling heals... trees... great hiking...). Daddy could use the quite house and the boys LOVE seeing the grandparents!
Despite swearing last summer, "I will NEVER do that trip with the boys by myself again!" Here I was by myself with the boys, DVD players running, van pack, travelling east on Interstate 64 for the long 8-10 hour trip (depending on how many stops we need to make). The perks for Frank seemed to out way the stress. We arrived at 1a.m. on Sunday morning. Because it was the 4th of July weekend, the boys and I went to the church picnic with Grand mommy (my mom). To be quite honest I was dreading it a bit... I was still wiped out form travelling and Caleb can have real issues in strange, loud, crowded places... and this would be all of that and more (100+ heat index)! But my fears were ill-directed.... The boys did rather well...
Grand mommy and I tag teamed it! She hung out with the boys as I got some good all-American hot dogs. Then I fed the boys while she got the sides. We both shoveled food down just in time for the boys to want something to drink. We gave a few hugs , exchanged a few. "How are you doing?"'s But all the while keep an eagle's eye on the boys...
As Mom I always have this nagging fear that my boys won't make friends, or that they will be picked on by other kids; yet, I want them to be independent individuals. This combined with other physical and social quarks we have not tried any organized sports. We go to the swimming pool, but that is not a team sport nor dose it require the boys to wait turns... But, what is a big picnic without some fun games?! They called for all sack race runners to come to the starting line... we watched as a small group of kids hopped down the grassy stretch. Once the kids were done they returned to their parents, but Caleb's gaze never left the burlap sacks. He casually but very purposefully started walking toward the vacant starting line. My first reaction was to yell at him to come back over to his seat... but I didn't, instead Grand mommy walked with him. Without any prompting Caleb pick up a sack, and in his own time and in his own awkward way, got that sack on & started jumping! I stood in total amazement...
"My Caleb just figured that out! MY Caleb! All by himself!" For kids with Down syndrome nothing comes easy... He has had therapies to teach him to do EVERYTHING! He still receives Physical, Occupational, Speech, Behavioral, & Music Therapies during the school year. We have had to literally teach him everything! Caleb watched what the other kids did... wanted to do it... and figured out how to do it himself! Totally amazing problem-solving-skills! And to beat all, this is a very age appropriate activity! Another struggles I have as a parent is seeing other kids mastering activities that Caleb (and Joshua) are unable to do... But Caleb was standing before me jumping his heart out in a potato sack! "My Caleb is growing up!"After some time to practice, Caleb got Grand mommy in a burlap sack as well. By this time the announcement had been made that another sack race was about to start. Adults and children alike were lining up with sacks on. Side by side, Caleb and Grand mommy waited for the, "On your mark... Get set.... GO!" With great effort and extreme concentration Caleb crossed the finish line of his first Sack Race! Several of the other "racers" cheered him on as he proudly finished the race. My heart was so full of joy that nearly cried!
I had one of those moments of peace... Caleb is growing up...he will get there... he will be potty trained... he will dress himself... he will carry on a conversation... he will... he can... he is able! Like this sack race, growing up is done in Caleb's own way... it takes a bit longer, it's done a bit differently, often it's a bit awkward, and is finished when he finally gets there! I just have to be patient...
Lord, thank you for creating Caleb and Joshua just they way they are! Thank you for have patients with me even when I seem to run this race at my own pace and a bit awkwardly... Help me to hear your cheering voice in the crowd!
Subscribe to:
Posts (Atom)