Tuesday, September 15, 2015
Typical Enough
L'Shana Tova...Happy New Year
We are starting off the Jewish new year really well, I am so happy to say.
Harrison went to his first High Holiday service, and he loved it!
I looked online for a service for people who are not affiliated with a synagogue, and the first site that appeared was, I kid you not, irisjacobs.com. If you don't know, that was my mom's name. Iris Jacobs. Harrison Isaac is named for her. Needless to say I did a double take when I saw her name with a .com after it...Mom died in 1991, before all of the tech that now rules our lives, so yes, my eyes nearly popped out of my head! I read further, and this woman has been leading services for holidays and milestones for years, and she sings, so lots and lots of music is incorporated into her service. So now I know that Harrison will enjoy it- we definitely are going! (The program is called Hayom).
Yesterday was the first day of Rosh Hashanah, and Harry and I were there. He LOVED it! He loved the music and joining in the singing, he loved hearing the shofar, he loved watching the procession of the Torah...and he insisted on standing every time the congregation stood (up-down-up-down)! I don't think I've ever enjoyed a service so much, sharing this with him. It was pretty cool.
And now Harrison is a First Grader. I can't believe it- he got a letter from his teacher talking about school supplies and his own desk. We visited the classroom the day before school began and saw some old friends. We walked around the classroom to find his name, his desk, his cubby, the calendar area, the jobs chart. And he is coming home with homework, which means I will be busy! And if you are wondering, yes, Harry does have the same helper, the Amazing Mrs. Mallon- whew!
It seems like yesterday Harry was in Mrs. Locke's Kindergarten class -he did spend two years with her, lucky guy! He worked his butt off in that classroom, and smiled and giggled his way through the whole second semester- nice change from last Fall! Harrison had so much more energy and he was so much more alert, and he made some really great progress.
To summarize the daily school reports from Kindergarten, Harrison was able to stand, holding onto a handle suctioned to the tabletop, for 9 minutes! He walked up and down the hallways (and our driveway- love that it's on a slope!) in the gait trainer, he helped out with the CARE Cart, and he has gotten very good at sitting up in his chair at group time. Mr. Social has gotten even more chatty, and he has really started paying close attention to people and making great eye contact when they talk to him. He sings along with his friends, and he stops if he doesn't like the song...
Harry is using his hands a lot more as well, reaching and grabbing for things, manipulating and feeling objects (and the dog), opening his hands nicely, tapping people to get their attention, greeting people with a wave, looking closely at materials, and much more willing to let teachers help him with hand-over-hand activities. I was particularly proud to see Harrison so much more engaged this year, especially at the end-of-year sing-along...it was so good to see him participate instead of sleep through it!
Harrison turned 7 in February, and his birthday party ROCKED!!! He had gone to his friend Stefano's party that had wild animals, and he totally wanted to same kind of party- Stef did not mind at all. Not only were most of his classmates there, but even his teachers came!
Harry had lots more play dates this year with his friends- sledding, swimming, going to the mall and the yogurt shop and the playground and the zoo and the park and friends' houses, walking on the rail trail, celebrating at graduation parties and birthday parties...and managing to fit all this in between therapy sessions- PT, Music, and of course Massage.
We have actually had a pretty busy year...after tweaking his medication doses, Harrison's seizures decreased tremendously, and his presence and participation in the world around him just blossomed! Not only was he able to make developmental progress in all areas (gross motor, fine motor, communication, eye contact) but his personality came through even more and he was better able to enjoy things. With less sleeping and more enthusiasm, Harry got to do so much- Sesame Place, a new backyard swing, lots of playdates, a weekend at the Cape and staying up late with the big kids, and the highlight of the summer- Camp Arrowhead!
Camp Arrowhead is a real day camp for kids with special needs. It's on a lake, so they can swim, in addition to the other traditional camp fun- basketball, arts and crafts, singing, special events, field trips- he had an absolute blast! Every camper gets a one-on-one high school volunteer, and the staff were wonderful. He went for 2 weeks this summer, and we will definitely do more next year! Every afternoon on the ride home he was either passed out or giggling, he was so happy! This past summer I almost felt like a "typical" mom. Typical enough for me.
We are starting off the Jewish new year really well, I am so happy to say.
Harrison went to his first High Holiday service, and he loved it!
I looked online for a service for people who are not affiliated with a synagogue, and the first site that appeared was, I kid you not, irisjacobs.com. If you don't know, that was my mom's name. Iris Jacobs. Harrison Isaac is named for her. Needless to say I did a double take when I saw her name with a .com after it...Mom died in 1991, before all of the tech that now rules our lives, so yes, my eyes nearly popped out of my head! I read further, and this woman has been leading services for holidays and milestones for years, and she sings, so lots and lots of music is incorporated into her service. So now I know that Harrison will enjoy it- we definitely are going! (The program is called Hayom).
Yesterday was the first day of Rosh Hashanah, and Harry and I were there. He LOVED it! He loved the music and joining in the singing, he loved hearing the shofar, he loved watching the procession of the Torah...and he insisted on standing every time the congregation stood (up-down-up-down)! I don't think I've ever enjoyed a service so much, sharing this with him. It was pretty cool.
And now Harrison is a First Grader. I can't believe it- he got a letter from his teacher talking about school supplies and his own desk. We visited the classroom the day before school began and saw some old friends. We walked around the classroom to find his name, his desk, his cubby, the calendar area, the jobs chart. And he is coming home with homework, which means I will be busy! And if you are wondering, yes, Harry does have the same helper, the Amazing Mrs. Mallon- whew!
It seems like yesterday Harry was in Mrs. Locke's Kindergarten class -he did spend two years with her, lucky guy! He worked his butt off in that classroom, and smiled and giggled his way through the whole second semester- nice change from last Fall! Harrison had so much more energy and he was so much more alert, and he made some really great progress.
To summarize the daily school reports from Kindergarten, Harrison was able to stand, holding onto a handle suctioned to the tabletop, for 9 minutes! He walked up and down the hallways (and our driveway- love that it's on a slope!) in the gait trainer, he helped out with the CARE Cart, and he has gotten very good at sitting up in his chair at group time. Mr. Social has gotten even more chatty, and he has really started paying close attention to people and making great eye contact when they talk to him. He sings along with his friends, and he stops if he doesn't like the song...
Harry is using his hands a lot more as well, reaching and grabbing for things, manipulating and feeling objects (and the dog), opening his hands nicely, tapping people to get their attention, greeting people with a wave, looking closely at materials, and much more willing to let teachers help him with hand-over-hand activities. I was particularly proud to see Harrison so much more engaged this year, especially at the end-of-year sing-along...it was so good to see him participate instead of sleep through it!
Harrison turned 7 in February, and his birthday party ROCKED!!! He had gone to his friend Stefano's party that had wild animals, and he totally wanted to same kind of party- Stef did not mind at all. Not only were most of his classmates there, but even his teachers came!
For Father's Day Harrison had a nice visit from Pop Pop and Mom Mom- she even fed him one of his favorites, chicken + squash!
Harry had lots more play dates this year with his friends- sledding, swimming, going to the mall and the yogurt shop and the playground and the zoo and the park and friends' houses, walking on the rail trail, celebrating at graduation parties and birthday parties...and managing to fit all this in between therapy sessions- PT, Music, and of course Massage.
He also got to spend some time with cousins, sadly because we had to say goodbye to Aunt Sharon in Pennsylvania- it was a very sweet, personal, loving service with lots of her favorite songs, and Harrison sang right along- she definitely enjoyed watching that from Heaven.
Camp Arrowhead is a real day camp for kids with special needs. It's on a lake, so they can swim, in addition to the other traditional camp fun- basketball, arts and crafts, singing, special events, field trips- he had an absolute blast! Every camper gets a one-on-one high school volunteer, and the staff were wonderful. He went for 2 weeks this summer, and we will definitely do more next year! Every afternoon on the ride home he was either passed out or giggling, he was so happy! This past summer I almost felt like a "typical" mom. Typical enough for me.
Tuesday, August 4, 2015
Changing of the Guard
After a very fun and active winter and spring, we has to say goodbye to our wonderful babysitters, all three of whom have moved on. I am still in denial over one person in particular, who has been with us for 4 years...Harry was 3, still had his trach, awful seizures, and none of it mattered as long as he was with his Maddy, or should I say Dr. Madeline Coquillette. Congratulations to Dr. Maddy for graduating Harvard Medical School and beginning your residency at Boston Children's Hospital! We are so proud of you Maddy, and sooooooo happy you are at least still in Boston so we know we will still get to play! Thank you for all of the wonderful memories you have created for Harrison.
Tuesday, January 13, 2015
Happy 2015!
We left off getting ready for a day at the theater to see The Nutcracker with babysitter Michaela and her hubby John.
They think he had a good time...hard to tell since Harrison has been grinding and chomping his teeth non stop for many many weeks now. And the fact that the Providence Center for Performing Arts is about as non-accessible as they come...even though one of the 3 tickets was for a wheelchair, the other 2 seats were in the middle of the row...so Harrison sat on their laps for the show. The bathroom was so small that they had to go to the car for a potty break / change...not impressed, won't be going back there.
Teeth grinding...oh my gosh it literally does not stop. Fingers in the mouth, both hands, wiggling all the loose baby teeth back and forth, or just crunching on rocks (or so it sounds) if his hands are otherwise occupied (or restrained!) Sunday December 14, 2014 was the big day...Harrison lost his first tooth...and not without a struggle. I gave this job over to John, and I just sat there with the cold compress while John wiggled it and wiggled it and pulled on it and wiggled it some more for 2 hours of screaming and torture and "almost there! almost there!"- it was like watching childbirth. Harrison had been screaming all morning (labor), so we knew it had to come out (delivery). It was exhausting, for both of them. Harrison crashed and slept for the rest of the day, and John wandered around in a daze. I can't believe we will have to go through this again!
Here is the tooth...I know, it's really big, and his remaining teeth look even bigger now that I have noticed...probably because he doesn't eat regularly and use his teeth enough to naturally wear them down. He did leave the tooth for the Tooth Fairy and he got a certificate and a Beanie Baby Crab (for being so crabby)! His classmates were very excited for his Show-and-Tell the next day.
Harry also got an amazing almost life-size stuffed horse, which he absolutely adores, especially since he is not riding this winter. Sooo snuggly.
We spent Christmas Eve with our friends the Grappos, and with his new chair bolster, Harrison got to sit with his friends at the kids table- that was really cool!
Like many growing boys (by the way, he has definitely grown, and thankfully put some weight back on- he is up to 37 1/2 pounds and 42 1/2 inches!) Harrison slept in through the whole holiday vacation, but he did manage to grab a little bit of entertainment. He watched Annie (the original movie) on tv and absolutely LOVED the music! And he had fun at the Enchanted Village at Jordan's Furniture, although he did not love the "snow" falling on him.
Harrison got one more very cool present...have you heard of Yogibo? Check it out!!! yogibo.com and take a look at Harry in his new very comfy and amazing chair- it's actually 2 pieces, a square pillow and a noodle pillow, and it allows for great positioning for him. LOVE IT!!!!! (Thank you for the idea, DS!!)
Harrison's babysitter Maddy took him to the New England Aquarium last weekend and he was the star of the party...
They went outside to see the fur seals, and this guy came charging over and jumped up onto the rail to talk to Harrison! Everyone ran over saying "that's the coolest thing!" Can't see his face here, but Maddy assures me that Harrison agreed. As you can see, he was wiped out that night but I bet he was dreaming about his new friend.
Harry was so ready to get back to school after the break, and he is having some great days. He is so chatty with everyone- his teachers, his friends, the nurse at lunch time; he is really looking at people and objects and pictures in books. He also had a really good session with his Augmentative Communication therapist at Children's Hospital...immediately vocalizing back and forth with her (he was very happy, hadn't seen her in a very long time), and using switches and buttons to play computer games and also be a bandleader with instruments for everybody- I really need to do more of these activities at home...I am really motivated to follow through this time, I swear!
This last picture I thought was so cute, Harrison reading a story with his angel Sally- she read to him through a "telephone" and he did a great job of using his finger to follow along the words. We are so lucky to have you, Sally!!
Teeth grinding...oh my gosh it literally does not stop. Fingers in the mouth, both hands, wiggling all the loose baby teeth back and forth, or just crunching on rocks (or so it sounds) if his hands are otherwise occupied (or restrained!) Sunday December 14, 2014 was the big day...Harrison lost his first tooth...and not without a struggle. I gave this job over to John, and I just sat there with the cold compress while John wiggled it and wiggled it and pulled on it and wiggled it some more for 2 hours of screaming and torture and "almost there! almost there!"- it was like watching childbirth. Harrison had been screaming all morning (labor), so we knew it had to come out (delivery). It was exhausting, for both of them. Harrison crashed and slept for the rest of the day, and John wandered around in a daze. I can't believe we will have to go through this again!
Here is the tooth...I know, it's really big, and his remaining teeth look even bigger now that I have noticed...probably because he doesn't eat regularly and use his teeth enough to naturally wear them down. He did leave the tooth for the Tooth Fairy and he got a certificate and a Beanie Baby Crab (for being so crabby)! His classmates were very excited for his Show-and-Tell the next day.
Chanuka began on Tuesday night the 16th, and for the first time, Harrison noticed and reacted to the candle lighting! I cannot explain how much that meant, and I guess I will have to brush up on those Chanuka songs for this year.
We celebrate Christmas in our house on December 23, which happened to be the last night of Chanuka, so it was really nice to have the whole family over to fully light the menorah together before we had dinner and opened Christmas presents. Harrison's favorite gift was...well, it wasn't really intended as a gift, but something came in a very glittery red bag, and when it happened to be opened right in front of him...you can see (with his brother) how his face just lit up!
Harry also got an amazing almost life-size stuffed horse, which he absolutely adores, especially since he is not riding this winter. Sooo snuggly.
We spent Christmas Eve with our friends the Grappos, and with his new chair bolster, Harrison got to sit with his friends at the kids table- that was really cool!
Harrison got one more very cool present...have you heard of Yogibo? Check it out!!! yogibo.com and take a look at Harry in his new very comfy and amazing chair- it's actually 2 pieces, a square pillow and a noodle pillow, and it allows for great positioning for him. LOVE IT!!!!! (Thank you for the idea, DS!!)
Harrison's babysitter Maddy took him to the New England Aquarium last weekend and he was the star of the party...
Harry was so ready to get back to school after the break, and he is having some great days. He is so chatty with everyone- his teachers, his friends, the nurse at lunch time; he is really looking at people and objects and pictures in books. He also had a really good session with his Augmentative Communication therapist at Children's Hospital...immediately vocalizing back and forth with her (he was very happy, hadn't seen her in a very long time), and using switches and buttons to play computer games and also be a bandleader with instruments for everybody- I really need to do more of these activities at home...I am really motivated to follow through this time, I swear!
This last picture I thought was so cute, Harrison reading a story with his angel Sally- she read to him through a "telephone" and he did a great job of using his finger to follow along the words. We are so lucky to have you, Sally!!
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