Our new school system has been really great. They created a day built for my buddy - morning kindergarten, work with Special Ed Teacher, lunch, and afternoon preschool. Since my buddy has an October birthday, he's one of the youngest in his kindergarten class and oldest in his preschool class. Even with a program designed for him - allowing him plenty of time to meet with all his therapists and play, my buddy has had a really tough year.
My buddy has his good days, but the usual for him is not that great. Most days there are times in the day where he throws himself down, refusing to do anything. I've had to go into his class for pickup because he refuses to walk out of the building. The school is working with a behaviorist and has implemented a reward system. So far it is helping. But we all know if he has a day where he drags his stubborn heels in the sand, there is nothing anyone can do.
His resistance to participate and cooperate is limiting what he is learning. It frustrates me and I'm sure it frustrates my buddy. My buddy has sleep apnea and rarely gets into a deep REM sleep. We head to the Pulmonologist soon and he will get a CPAP machine for home. The good news is he responded really well in the sleep study when he was hooked up to the machine. My dream for my buddy is that sleeping better and deeper will make a world of difference for his school day.
We've come to the decision that next year the best place for my buddy will be in the full day kindergarten program. Technically, it is considered holding him back because he is officially enrolled in kindergarten this year. I never envisioned my buddy repeating a year of school, but I am realistic enough to know that pushing him into first grade next year would not be in his best interest. He's had one foot in two different grades this year and we learned that my buddy fits in better with the preschoolers. He will get so much more from a full day of kindergarten next year.
Just like with all the other obstacles we face with my buddy, it's disappointing when he doesn't leap over them with ease. It's just another reminder that he is driving his own car and we are just along for the ride. I'm fairly certain his car is a Monster Truck, smashing and crushing as it slowly gets to the finish line.
On a side note, our backyard is half ice flow half mud. It makes for interesting times that require a full load of laundry when we come inside. Oh and we are still waiting for some sunshine.
March 29, 2014
March 17, 2014
the bar
Sometimes it's hard to know how high to set the bar for your children. You want to set it high enough so they have to stretch and grow to reach it... but not so high they give up in defeat. For me, this is much easier with my girls. It's pretty clear what they are capable of and what they need to work harder on. With my buddy, it's like some days he's almost there and other days he needs a step ladder to even get close.
I never know how hard to push him. I don't make a good motivational speaker. I have no competitive drive. Pushing does not come naturally to me. I also don't want our whole life to be focused on my buddy. I think what I need is a crystal ball that can show me different outcomes based on different choices.
My buddy just came home with a progress report. While I am used to seeing a long series of below grade level (except for Music and PE which he rocks), I was taken aback by many areas where his progress has declined. I know he has been refusing to do a lot of the work at school and they are working on some behavior modifications. Is his behavior impeding his learning? Is it to be expected for him to decline in some areas?
I could hire a behaviorist to come to our house and work on a program at home as well. I just need that crystal ball too see if it would really work in the long run. I know it would be a lot of work for me as well as time focused on my buddy and away from the girls. Would we all benefit? Do I have the energy to make it work? I seem to have more questions than answers.
We had one afternoon of warm weather... not enough to melt the snow but enough to give us all a little spring fever.
I never know how hard to push him. I don't make a good motivational speaker. I have no competitive drive. Pushing does not come naturally to me. I also don't want our whole life to be focused on my buddy. I think what I need is a crystal ball that can show me different outcomes based on different choices.
My buddy just came home with a progress report. While I am used to seeing a long series of below grade level (except for Music and PE which he rocks), I was taken aback by many areas where his progress has declined. I know he has been refusing to do a lot of the work at school and they are working on some behavior modifications. Is his behavior impeding his learning? Is it to be expected for him to decline in some areas?
I could hire a behaviorist to come to our house and work on a program at home as well. I just need that crystal ball too see if it would really work in the long run. I know it would be a lot of work for me as well as time focused on my buddy and away from the girls. Would we all benefit? Do I have the energy to make it work? I seem to have more questions than answers.
We had one afternoon of warm weather... not enough to melt the snow but enough to give us all a little spring fever.
March 10, 2014
party
I took my buddy to a birthday party this weekend. I thought it was for a kindergarten friend, but as I looked closer, I realized it was for a preschool friend. It can be confusing with my buddy being in two grades at once. Anyway, I was relieved that it was a preschool friend because he has more in common with that age group. So off we went to an indoor jumpy party.
We were the first group there, so it was nearly empty in the beginning. My buddy ran from one thing to another having a blast. He would get frustrated when he couldn't climb one, so I'd kick off my shoes and force him to try with my help. Once he got it, he was doing so great. I was proud of his physical ability.
Then another party started and open play as well. Before I knew it the place was crowded and loud. One of my buddy's preschool friends started playing rough with him - wrestling and pulling my buddy down. More than once, I kicked off my shoes and climbed into a bouncy to speak to the boy and stop my buddy from hitting him. My buddy started getting really frustrated and angry. He lets out this primal scream and just hits and kicks anyone nearby. So I scooped him up (haha. sounds so simple but he was in a bouncy not wanting to be picked up and he's 50 pounds) We headed out to the lobby for some quiet.
Then it was time to sit in the party room and eat pizza (which my buddy won't eat). He only wanted to pull the Angry Birds decoration off the top of the cake and he was losing his mind. So I decided to cut my losses and head home. We said Happy Birthday and Thank You. I forced myself not to apologize yet I still couldn't look all the other parents in the face. I don't want to see the look of pity or relief that it's me and not them.
I've been listening to parents of older kids feeling sad that their kid with Ds doesn't have the social life they want. How their child doesn't get the invites to come over and hang out with the other kids. It can be hard thinking about years and years of adjusting our expectations and, lets face it, adjusting our life to accommodate my buddy's needs. But then he puts on fairy wings and a frilly skirt and runs around the house with joyful abandon... and that joy is so great.
We were the first group there, so it was nearly empty in the beginning. My buddy ran from one thing to another having a blast. He would get frustrated when he couldn't climb one, so I'd kick off my shoes and force him to try with my help. Once he got it, he was doing so great. I was proud of his physical ability.
Then another party started and open play as well. Before I knew it the place was crowded and loud. One of my buddy's preschool friends started playing rough with him - wrestling and pulling my buddy down. More than once, I kicked off my shoes and climbed into a bouncy to speak to the boy and stop my buddy from hitting him. My buddy started getting really frustrated and angry. He lets out this primal scream and just hits and kicks anyone nearby. So I scooped him up (haha. sounds so simple but he was in a bouncy not wanting to be picked up and he's 50 pounds) We headed out to the lobby for some quiet.
Then it was time to sit in the party room and eat pizza (which my buddy won't eat). He only wanted to pull the Angry Birds decoration off the top of the cake and he was losing his mind. So I decided to cut my losses and head home. We said Happy Birthday and Thank You. I forced myself not to apologize yet I still couldn't look all the other parents in the face. I don't want to see the look of pity or relief that it's me and not them.
I've been listening to parents of older kids feeling sad that their kid with Ds doesn't have the social life they want. How their child doesn't get the invites to come over and hang out with the other kids. It can be hard thinking about years and years of adjusting our expectations and, lets face it, adjusting our life to accommodate my buddy's needs. But then he puts on fairy wings and a frilly skirt and runs around the house with joyful abandon... and that joy is so great.
March 4, 2014
Moms are amazing
I just want to send some love to all the moms out there. I think you all are amazing. We make magic happen. Pain disappears with just one kiss. Hearts grow with one warm smile. Fear disappears with a tight embrace.
We all are amazing. We play Candyland (which is SO boring). We read the same book a gazillion times. We stay up all night with a sick child and still manage to make our magic happen the next day. We do the same silly thing over and over just to hear that belly laugh. When our 6 year old assures us she sings "just like Elsa" (she doesn't) we smile.
Sure, we may have our moments. Those afternoons when we pop the kid in front of a screen of one sort or another just so we can sneak a sliver of peace. Hiding in the kitchen with a cup of tea and a cookie. That time we yelled just a little too loud.
All those days we feel like we are failing them. We are wrong.
Our kids remember the safety of our arms. How happy they felt when we laughed together. How we share their excitement and learned about the things they love. We became experts in construction equipment or sports fans or learned all the words to Let It Go. They remember how they felt our love when we rubbed their back or tousled their hair.
Our kids love us just the way we are. Our kids see our beauty. Moms are magical.
We all are amazing. We play Candyland (which is SO boring). We read the same book a gazillion times. We stay up all night with a sick child and still manage to make our magic happen the next day. We do the same silly thing over and over just to hear that belly laugh. When our 6 year old assures us she sings "just like Elsa" (she doesn't) we smile.
Sure, we may have our moments. Those afternoons when we pop the kid in front of a screen of one sort or another just so we can sneak a sliver of peace. Hiding in the kitchen with a cup of tea and a cookie. That time we yelled just a little too loud.
All those days we feel like we are failing them. We are wrong.
Our kids remember the safety of our arms. How happy they felt when we laughed together. How we share their excitement and learned about the things they love. We became experts in construction equipment or sports fans or learned all the words to Let It Go. They remember how they felt our love when we rubbed their back or tousled their hair.
Our kids love us just the way we are. Our kids see our beauty. Moms are magical.
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