No more Mrs. Nice Pants. My buddy's teachers are about to see the Mama and Papa Bear come out of hibernation. I've been concerned about the amount of speech therapy my buddy was receiving at school. We recently had an informal meeting with his teacher and speech therapist about it and the response we got was - we're still getting to know him.
My mom is in town and she also happens to be a retired Special Education Teacher. We talked about what my buddy was receiving - she couldn't believe how little speech therapy he was getting. I also showed her the IEP (which they never reviewed with me, just stuck into my buddy's backpack one day) and apparently a lot of the goals are poor.
The most frustrating thing as a parent is I don't speak special ed. I am more than willing to fight for what he needs, but I need a professional to help me figure out what he needs. Silly me thought his teacher and team of specialists would be there for me and want to do everything they can to help my buddy succeed.
The good news is my mom still has many friends in the education field and we will have no problem finding an advocate to help us. She will know the proper words to use and what is reasonable to ask for... and fight for if it comes to that.
I really wanted to have a positive experience our first year in school with no battles. I assumed the school would offer everything they could giving my buddy the opportunity he needs to grow and learn. The rose colored glasses are off.
December 27, 2011
December 12, 2011
assessment
My buddy had his first parent teacher conference last week. I have gotten very used to having my buddy assessed by Birth to 3. I never expect him to perform above age range and I am thrilled when he does something on a typical timeline. Birth to 3 concentrated on areas he needed help with in a more clinical way.
I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light. There are 30 different Performance Standards in which he has been observed and assessed on. Only 3 of those he performed at a less than 3 year old range. Of course those all dealt with communication. Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.
Of course my favorite is 'Shows empathy and caring for others.' He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.
I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it. At first I was over the moon. Finally a report that shows how amazing he is.
I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy. Yet he was assessed at a 3 year old level in all these areas.
I know in the big picture none of these things matter. My buddy will make it through school fine - doing better in some areas than other areas. As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.
I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light. There are 30 different Performance Standards in which he has been observed and assessed on. Only 3 of those he performed at a less than 3 year old range. Of course those all dealt with communication. Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.
Of course my favorite is 'Shows empathy and caring for others.' He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.
I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it. At first I was over the moon. Finally a report that shows how amazing he is.
I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy. Yet he was assessed at a 3 year old level in all these areas.
I know in the big picture none of these things matter. My buddy will make it through school fine - doing better in some areas than other areas. As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.
November 10, 2011
doctors
My buddy, aside from the extra chromosome, is a healthy little boy. Yet that extra chromosome demands so many different doctors appointments. As a newborn we saw a heart doctor for an echo-cardiogram and a pulminologist to try and figure out why he couldn't kick the oxygen. We were so relieved that my buddy didn't need open heart surgery or a feeding tube or any other surgery for that matter.
He has had about 9 complete blood counts done. Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein. The easiest one was done when he was born. They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse. My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button. He was lying with both arms and legs out not moving at all. Turns out he liked the heat and fell fast asleep. They opened his belly button and got the blood they needed and closed it up like new.
We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT. My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up. All this is on top of the usual pediatrician appointments. For a while there it felt like we were always at some doctor or another. My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics.
I am heading to the CT Down Syndrome Congress annual convention in a few days. I will learn about even more tests and procedures that are now being recommended. We have been very fortunate that my buddy has no major eating issues or health concerns. I want my buddy to be as healthy as he can be. But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.
He has had about 9 complete blood counts done. Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein. The easiest one was done when he was born. They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse. My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button. He was lying with both arms and legs out not moving at all. Turns out he liked the heat and fell fast asleep. They opened his belly button and got the blood they needed and closed it up like new.
We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT. My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up. All this is on top of the usual pediatrician appointments. For a while there it felt like we were always at some doctor or another. My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics.
I am heading to the CT Down Syndrome Congress annual convention in a few days. I will learn about even more tests and procedures that are now being recommended. We have been very fortunate that my buddy has no major eating issues or health concerns. I want my buddy to be as healthy as he can be. But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.
October 18, 2011
school
My buddy is officially a preschooler. He loves school and is excited in the morning to go. I have to physically restrain him just to give a quick kiss before he runs into the building. He could care less that Mommy is leaving. I was emotionally fine on the first day. I knew he wouldn't cry and he would have fun. It's right up his alley - a room of fun toys and friends to share them with.
As the days go by - Ok so it's only been 3 days but that's not the point - I'm having a harder and harder time with it. All the parents get a sheet home that says what the story was, what songs they sang, what activities they did and what snack was. But that is all I know. My buddy can't tell me anything about what he did. I have no idea if he tried the snack, ate any of it, drank anything. Did he sit for circle time? Has he been listening? Do the other kids play with him? Is he trying to communicate with anyone or is he quiet?
I don't know if I'm being Overprotective Mom by wanting to know all of this. I know it's only 2.5 hours and I don't expect the teacher to give me a blow by blow but I get very little information.
I also didn't expect so much of preschool to be above my buddy. I know that sounds crazy. He has Down syndrome and will never be on target with his peers. I also know that when he is little is the closest he will ever be to being on target - the gap will only widen as he gets older.
When I think about the class having a discussion of their neighborhood I can't help thinking about the obvious - my buddy can't talk so he can't really be a part of the discussion. But on top of that, I don't think he even knows what a neighborhood is. They drew pictures of their favorite toy. Aside from the fact that there is no picture drawing for my buddy, I don't think he could answer (even using signs) if asked what his favorite toy is. They have to bring in something from home to share with the class. Sure I can stick a toy in his backpack, but how is he going to share it with the other kids? Other than naming it (with signs) and possibly saying the color, (with signs) that's about all he has.
I need to just let it go. My buddy loves school and that should be enough for me.
As the days go by - Ok so it's only been 3 days but that's not the point - I'm having a harder and harder time with it. All the parents get a sheet home that says what the story was, what songs they sang, what activities they did and what snack was. But that is all I know. My buddy can't tell me anything about what he did. I have no idea if he tried the snack, ate any of it, drank anything. Did he sit for circle time? Has he been listening? Do the other kids play with him? Is he trying to communicate with anyone or is he quiet?
I don't know if I'm being Overprotective Mom by wanting to know all of this. I know it's only 2.5 hours and I don't expect the teacher to give me a blow by blow but I get very little information.
I also didn't expect so much of preschool to be above my buddy. I know that sounds crazy. He has Down syndrome and will never be on target with his peers. I also know that when he is little is the closest he will ever be to being on target - the gap will only widen as he gets older.
When I think about the class having a discussion of their neighborhood I can't help thinking about the obvious - my buddy can't talk so he can't really be a part of the discussion. But on top of that, I don't think he even knows what a neighborhood is. They drew pictures of their favorite toy. Aside from the fact that there is no picture drawing for my buddy, I don't think he could answer (even using signs) if asked what his favorite toy is. They have to bring in something from home to share with the class. Sure I can stick a toy in his backpack, but how is he going to share it with the other kids? Other than naming it (with signs) and possibly saying the color, (with signs) that's about all he has.
I need to just let it go. My buddy loves school and that should be enough for me.
October 13, 2011
end of an era
Birth to 3 has been coming to my house since my buddy was 4 weeks old. There have been small changes and additions to our team but for the most part they've supported, educated, and worked my buddy to the bone for the past 3 years. When he hears that knock, his face lights up and he goes running to the door.
Monkey bear has been known to play speech therapy or physical therapy - games that I'm sure aren't in every house! She studied the therapists and helped with encouraging words then puts her babies through the trenches.
There have been times when I didn't want someone coming over twice a week every week and felt like my child wasn't my own. It's tough having the 'homework' and list of exercises I should be doing with my buddy. I always dreaded the report of, "he hasn't done anything new." But I know with all my heart that he would never be doing all the things he is able to do without their guidance and knowledge.
Our Birth to 3 team came the other day for a goodbye party. Since it was a party, monkey bear insisted I bake a cake. They brought balloons and presents - even one for monkey bear for being such a good helper. They all ate cake even though it was 9:30am. There were hugs all around. My buddy made two rounds with the hugs and gave out some kisses as well. It was bittersweet.
Monkey bear has been known to play speech therapy or physical therapy - games that I'm sure aren't in every house! She studied the therapists and helped with encouraging words then puts her babies through the trenches.
There have been times when I didn't want someone coming over twice a week every week and felt like my child wasn't my own. It's tough having the 'homework' and list of exercises I should be doing with my buddy. I always dreaded the report of, "he hasn't done anything new." But I know with all my heart that he would never be doing all the things he is able to do without their guidance and knowledge.
Our Birth to 3 team came the other day for a goodbye party. Since it was a party, monkey bear insisted I bake a cake. They brought balloons and presents - even one for monkey bear for being such a good helper. They all ate cake even though it was 9:30am. There were hugs all around. My buddy made two rounds with the hugs and gave out some kisses as well. It was bittersweet.
October 3, 2011
Disney
We survived and maybe even flourished on our Disney vacation. Both the kids were amazing. I had some doubts and reservations before leaving. I just can't believe how good they did.
A friend lent us a portable DVD player which saved the airplane flight. A few episodes of Dora and Signing Time and my buddy (who was strapped into his car seat to prevent escape) was entertained and quiet. Monkey bear was so excited to be on an airplane - and eating Jelly Bellies. And what child doesn't love a bus ride? Disney had its share of buses for us to ride.
Our hotel was beautiful and Nana and Grampa were there to help. My buddy loved the free reign of running through the bedrooms, kitchen, and living room. He quickly discovered that he could climb into the jacuzzi tub and turn the water on all by himself. I quickly discovered the door handles were just tricky enough that he couldn't open them himself.
Disney is so good about guests with special needs. We got a pass that allowed us to skip almost all the lines. We never waited more than maybe 10 minutes for anything. Which is a good thing because at about 8 minutes my buddy has had enough. At about 9 minutes my arms are about to fall off holding him and the sweat from his little furnace body in the hot FL weather is about too much to bear. Good thing there were 4 adults.
Monkey bear was overwhelmed when we first stepped into the Magic Kingdom. She refused to smile, talk, or get out of the stroller. We went on Small World and she lifted her head in interest. We went on Peter Pan and she said, "Can we ride that again?" And we did. Monkey bear loved all the rides and loved hugging each character she met. At first she wasn't sure. She kept asking me, "Are they real?" "Of course they are."
When my buddy first spied Mickey Mouse (after we skipped the gigantic line) he went running right into his arms with the biggest smile on his face. His favorite ride was the carousel. I truly love everything Disney, but this carousel is awful. It is slow and only spins around 3 times. But if we walked by it, my buddy would sign 'horse' and point and throw a fit if we didn't ride.
It was really hot and the kids would melt around 2pm each day. My buddy woke from his stroller nap drenched in sweat. But a short stroll from our room was a pool with a playground next to it. We stayed up late one night for the light parade. Monkey bear was in love. She sat on my shoulders and clapped, pointed, and waved.
The only bad thing is we are in the post vacation slump. Monkey bear wants to know why we have to live in CT and why we don't live in Disney World. My buddy will randomly throw himself on the ground in protest. I imagine he is thinking, "hey where's all the entertainment?"
A friend lent us a portable DVD player which saved the airplane flight. A few episodes of Dora and Signing Time and my buddy (who was strapped into his car seat to prevent escape) was entertained and quiet. Monkey bear was so excited to be on an airplane - and eating Jelly Bellies. And what child doesn't love a bus ride? Disney had its share of buses for us to ride.
Our hotel was beautiful and Nana and Grampa were there to help. My buddy loved the free reign of running through the bedrooms, kitchen, and living room. He quickly discovered that he could climb into the jacuzzi tub and turn the water on all by himself. I quickly discovered the door handles were just tricky enough that he couldn't open them himself.
Disney is so good about guests with special needs. We got a pass that allowed us to skip almost all the lines. We never waited more than maybe 10 minutes for anything. Which is a good thing because at about 8 minutes my buddy has had enough. At about 9 minutes my arms are about to fall off holding him and the sweat from his little furnace body in the hot FL weather is about too much to bear. Good thing there were 4 adults.
Monkey bear was overwhelmed when we first stepped into the Magic Kingdom. She refused to smile, talk, or get out of the stroller. We went on Small World and she lifted her head in interest. We went on Peter Pan and she said, "Can we ride that again?" And we did. Monkey bear loved all the rides and loved hugging each character she met. At first she wasn't sure. She kept asking me, "Are they real?" "Of course they are."
When my buddy first spied Mickey Mouse (after we skipped the gigantic line) he went running right into his arms with the biggest smile on his face. His favorite ride was the carousel. I truly love everything Disney, but this carousel is awful. It is slow and only spins around 3 times. But if we walked by it, my buddy would sign 'horse' and point and throw a fit if we didn't ride.
It was really hot and the kids would melt around 2pm each day. My buddy woke from his stroller nap drenched in sweat. But a short stroll from our room was a pool with a playground next to it. We stayed up late one night for the light parade. Monkey bear was in love. She sat on my shoulders and clapped, pointed, and waved.
The only bad thing is we are in the post vacation slump. Monkey bear wants to know why we have to live in CT and why we don't live in Disney World. My buddy will randomly throw himself on the ground in protest. I imagine he is thinking, "hey where's all the entertainment?"
September 13, 2011
frustration
We had a few sweet weeks where my buddy was communicating well, eating at the big table, happy and (almost) behaving. He was also sleeping through the night. Ahhhhh... it was so nice. Needless to say, we aren't there anymore.
My buddy has reached max-frustration level. I really don't know what to do for him. There are several things that can set him off like when the music in the car isn't what he wants. If we are out for a walk and monkey bear gets too far ahead of him. When he wants to watch TV and it's turned off. And, of course, anytime I say, "no".
His reaction these days is to throw himself on the ground while complaining. My buddy will also bang his head on the ground or hit himself in the head. And there is no shortage of throwing and screaming. He doesn't want to hear anything you have to say and the only thing I can do is just hug him. I understand that this is typical behavior in younger kids but it just more painful to watch your almost 3 year old acting this way.
Some days he really tries to tell me things, but even with the signs he can be hard to understand. My buddy says only the ending sound to words. So horse and shoes sounds the same. As does bike, walk, and truck. Those times when he tries to tell me something new and I actually get it, we are both so proud.
The latest manifestation is his refusal to eat anything that isn't a cracker. I make my buddy a meal - one that he typically loves and would eat every last bite of - he will nibble a little then spit it out and throw it across the room. Then he says, "eat" and does his little, "hmmmmmm" like he is thinking of what he wants to eat. The only time he does eat is when I get him a snack and he sits down on the ground in front of the TV. (I know ... mother-of-the-year award here I come.)
It's been about a week with no fruit, no protein, little veges, and lots of milk and crackers. I can't even get my buddy to eat a vitamin. I've hear so many moms say, "Jimmy won't graduate High School doing (insert undesired behavior here)." Meaning, don't sweat it because it will pass just like everything eventually does. But I can picture my buddy being 18 and sitting in front of the TV eating crackers.
Do I take the pressure off and just let him eat only crackers hoping he'll change his mind and join us for a meal? Do I get super strict and only offer him food if he is sitting at the table? Does his high chair pulled up to the table not really work for him? Maybe there is nothing different I can do.
My buddy has reached max-frustration level. I really don't know what to do for him. There are several things that can set him off like when the music in the car isn't what he wants. If we are out for a walk and monkey bear gets too far ahead of him. When he wants to watch TV and it's turned off. And, of course, anytime I say, "no".
His reaction these days is to throw himself on the ground while complaining. My buddy will also bang his head on the ground or hit himself in the head. And there is no shortage of throwing and screaming. He doesn't want to hear anything you have to say and the only thing I can do is just hug him. I understand that this is typical behavior in younger kids but it just more painful to watch your almost 3 year old acting this way.
Some days he really tries to tell me things, but even with the signs he can be hard to understand. My buddy says only the ending sound to words. So horse and shoes sounds the same. As does bike, walk, and truck. Those times when he tries to tell me something new and I actually get it, we are both so proud.
The latest manifestation is his refusal to eat anything that isn't a cracker. I make my buddy a meal - one that he typically loves and would eat every last bite of - he will nibble a little then spit it out and throw it across the room. Then he says, "eat" and does his little, "hmmmmmm" like he is thinking of what he wants to eat. The only time he does eat is when I get him a snack and he sits down on the ground in front of the TV. (I know ... mother-of-the-year award here I come.)
It's been about a week with no fruit, no protein, little veges, and lots of milk and crackers. I can't even get my buddy to eat a vitamin. I've hear so many moms say, "Jimmy won't graduate High School doing (insert undesired behavior here)." Meaning, don't sweat it because it will pass just like everything eventually does. But I can picture my buddy being 18 and sitting in front of the TV eating crackers.
Do I take the pressure off and just let him eat only crackers hoping he'll change his mind and join us for a meal? Do I get super strict and only offer him food if he is sitting at the table? Does his high chair pulled up to the table not really work for him? Maybe there is nothing different I can do.
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