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!
