Day 15 of Better Speech and Hearing Month
Celebrations
So as a parent of a child with Apraxia and SPD, there are things we celebrate. Just today, I celebrated the fact that Cha-cha is now yelling when he's frustrated. Yes, at 4 years old, I'm excited that when he's frustrated (mostly with his sister), he stops what he's doing and yells. To some that is just an annoyance, but to me, it's music to my ears (well for today maybe). Usually he's very passive and agreeable (thanks to the underresponsive SPD), but seeing him branch out is great.
Also, today I celebrated the fact that my progress meeting with Cha-cha's school actually went well. They handed over the IEP amendment with no issues, I signed it and handed it back. I heard great reports from his teacher, new SLP, OT and PT. They commented that now he has consistent speech and a consistent schedule, he's doing really well adjusting. It was nice to hear good things from his TEAM.
And tonight I celebrated being a mom at dinner with some friends. I love getting together with women and talking about being a mom. It's the most challenging job you will ever do - more challenging than being a full time teacher. There are so many balls we have to juggle as a mother and it's a miracle that we are able to do it all. So while you celebrate your kid's accomplishments, don't forget to celebrate your own. :)
Wednesday, May 15, 2013
Tuesday, May 14, 2013
Day 14 - You Are Not Alone - Apraxia Awareness Day
Day 14 of Better Hearing and Speech Month
You Are Not Alone - Apraxia Awareness Day
This morning, I got up and put on my blue 2012 Apraxia Walk shirt and Bee-bee met me in the kitchen wearing hers and we took our picture and I posted it on FB. Cha-cha was still sleeping as I left, but his blue shirt was waiting for him. I brought to school (my work) more ribbons to replenish the ones that were taken in the teacher's room yesterday so more of my coworkers could wear them. As I was writing my morning message, FB was exploding with messages from CASANA, Apraxia Kids, and the friends I've made who also have children who have Apraxia. Posts and pictures from friends and their kids, Cha-cha's daycare provider, and friends sharing other statuses about Apraxia, made my heart soar.
Yes, it sucks to have a child who has this neurological motor planning disorder, but the biggest message that I got from today is that we are not alone. There are other children out there and other moms just like me, who are fighting for awareness and pushing for better treatments and therapies to help our children. There are some friends who don't even really know what Apraxia is, but today, wearing that ribbon, they supported Cha-cha and what he goes through every day. Seeing the ribbon on coworkers who work on opposite sides of the building, who I barely see, made me smile and even tear up that they are with us. They are learning what Apraxia is about and they too want the best for children who have this disorder. Hearing about how my school psychologist and how she explained to a kindergartener why she was wearing a ribbon today was pretty amazing. Having a coworker ask me how Cha-cha was doing and progressing made me proud of our efforts. Seeing my principal explain to our new principal candidate and Superintendent about how our school joins together to support each other, as she was wearing a ribbon and pointing out a picture of "Cha-cha" - priceless. Hearing Bee-bee explain to her after-school counselor about what Apraxia is and how it effects her brother - amazing.
I feel very fortunate to have such great family and friends - and an extended family and friends in the Apraxia Community. We may not always agree on what therapy is best or what diet works with our kid this week or what brand of Omega-3 supplements you should/shouldn't be giving - but we're all trying to figure this out - together. We are not alone.
You Are Not Alone - Apraxia Awareness Day
This morning, I got up and put on my blue 2012 Apraxia Walk shirt and Bee-bee met me in the kitchen wearing hers and we took our picture and I posted it on FB. Cha-cha was still sleeping as I left, but his blue shirt was waiting for him. I brought to school (my work) more ribbons to replenish the ones that were taken in the teacher's room yesterday so more of my coworkers could wear them. As I was writing my morning message, FB was exploding with messages from CASANA, Apraxia Kids, and the friends I've made who also have children who have Apraxia. Posts and pictures from friends and their kids, Cha-cha's daycare provider, and friends sharing other statuses about Apraxia, made my heart soar.
Yes, it sucks to have a child who has this neurological motor planning disorder, but the biggest message that I got from today is that we are not alone. There are other children out there and other moms just like me, who are fighting for awareness and pushing for better treatments and therapies to help our children. There are some friends who don't even really know what Apraxia is, but today, wearing that ribbon, they supported Cha-cha and what he goes through every day. Seeing the ribbon on coworkers who work on opposite sides of the building, who I barely see, made me smile and even tear up that they are with us. They are learning what Apraxia is about and they too want the best for children who have this disorder. Hearing about how my school psychologist and how she explained to a kindergartener why she was wearing a ribbon today was pretty amazing. Having a coworker ask me how Cha-cha was doing and progressing made me proud of our efforts. Seeing my principal explain to our new principal candidate and Superintendent about how our school joins together to support each other, as she was wearing a ribbon and pointing out a picture of "Cha-cha" - priceless. Hearing Bee-bee explain to her after-school counselor about what Apraxia is and how it effects her brother - amazing.
I feel very fortunate to have such great family and friends - and an extended family and friends in the Apraxia Community. We may not always agree on what therapy is best or what diet works with our kid this week or what brand of Omega-3 supplements you should/shouldn't be giving - but we're all trying to figure this out - together. We are not alone.
Monday, May 13, 2013
Day 13 -Get Ready!
Get Ready!!!
Tomorrow is the first Apraxia Awareness Day! I passed out ribbons to coworkers and our blue 2012 walk shirts are ready for tomorrow!!!
Woo-hoo!
Tomorrow is the first Apraxia Awareness Day! I passed out ribbons to coworkers and our blue 2012 walk shirts are ready for tomorrow!!!
Woo-hoo!
Sunday, May 12, 2013
May 12 - Mother's Day and the "Normal" Stuff
Day 12 of Better Hearing and Speech Month
Mother's Day and the "Normal" Stuff
I've been writing now for 11 days about CAS and how it pertains to our family. CAS is not the only thing we focus on as a family - there are plenty of other "normal" day to day things that Hubby and I have to juggle to make our family work.
Take this past week for instance - On Thursday, I had work obligations at a retirement, Bee-bee had ballet class and Hubby couldn't take time off of work to get her there and back. Thankfully my dad was able to pick her up and a good friend was able to drive her to my work at the end of the party, meanwhile Cha-cha's daycare provider kept him later than usual for me so we could make it all work. It's a fine balance that any parent has to go through to make the dance of parenting work. On Friday, Bee-bee had Irish Step, so again, I had to make sure I got out of work on time, to pick her up at school on time, to get her home and dressed, to pick Cha-cha up on time, and then to get to dance on time. Hubby had a night out with his friends, so I did the bedtime routine. Saturday was speech for Cha-cha and soccer and team pictures for Bee-bee, a trip to a museum for Cha-cha and my cousin and her son, and then Hubby took the kids out to dinner so I could go out with a friend and he did the bedtime routine. Of course then when I came home, we were getting ready for bed and Hubby let our dog Buddy outside, and sure enough, he was sprayed by a skunk. At 11:00pm at night. I don't think either one of us were happy, or had a lot of patience at that point - but we bathed the dog and I re-washed my kitchen floor and got myself to bed by 12:45am.
Today was Mother's Day. Hubby had soccer, I had a visit with my sister, the kids and I baked brownies, and later on today we headed up to visit with my parents at their house. We had some magical moments today - the two kids cuddling on the couch, the kids seeing the magical fairy doors that "appeared" in my parent's crab apple tree, Bee-bee finding money in behind the fairy doors, eating popsicles on the rock with Cha-cha, watching a dog try to swim in a puddle, and Hubby taking Bee-bee to the carnival near our house. All of these things could be "normal" in any family - special needs or no special needs.
So where does Apraxia fit into all of this? Well, it's integrated into who our family is. We had to remind Bee-bee many times not to butt into Cha-cha trying to talk. We had speech yesterday that sort of turned into a disaster because he wanted a certain toy from Toys R Us that he perseverated on from the night before. We paused countless times so we could understand what Cha-cha was saying. We had to translate to Bee-bee what Cha-cha was saying, even though he said it and she refused to listen to him because he didn't say it directly to her. We repeated many times what we thought he said back to us. We asked him many times to speak up. We asked him many times to make eye contact. We asked him many times to repeat 2-4 times what he said so we could try to understand him. We sat through at least 5 screaming in frustration tantrums today alone. Do "normal" families have to go through this? They probably do, just I don't know to what extent, because this is our "normal."
Mother's Day and the "Normal" Stuff
I've been writing now for 11 days about CAS and how it pertains to our family. CAS is not the only thing we focus on as a family - there are plenty of other "normal" day to day things that Hubby and I have to juggle to make our family work.
Take this past week for instance - On Thursday, I had work obligations at a retirement, Bee-bee had ballet class and Hubby couldn't take time off of work to get her there and back. Thankfully my dad was able to pick her up and a good friend was able to drive her to my work at the end of the party, meanwhile Cha-cha's daycare provider kept him later than usual for me so we could make it all work. It's a fine balance that any parent has to go through to make the dance of parenting work. On Friday, Bee-bee had Irish Step, so again, I had to make sure I got out of work on time, to pick her up at school on time, to get her home and dressed, to pick Cha-cha up on time, and then to get to dance on time. Hubby had a night out with his friends, so I did the bedtime routine. Saturday was speech for Cha-cha and soccer and team pictures for Bee-bee, a trip to a museum for Cha-cha and my cousin and her son, and then Hubby took the kids out to dinner so I could go out with a friend and he did the bedtime routine. Of course then when I came home, we were getting ready for bed and Hubby let our dog Buddy outside, and sure enough, he was sprayed by a skunk. At 11:00pm at night. I don't think either one of us were happy, or had a lot of patience at that point - but we bathed the dog and I re-washed my kitchen floor and got myself to bed by 12:45am.
Today was Mother's Day. Hubby had soccer, I had a visit with my sister, the kids and I baked brownies, and later on today we headed up to visit with my parents at their house. We had some magical moments today - the two kids cuddling on the couch, the kids seeing the magical fairy doors that "appeared" in my parent's crab apple tree, Bee-bee finding money in behind the fairy doors, eating popsicles on the rock with Cha-cha, watching a dog try to swim in a puddle, and Hubby taking Bee-bee to the carnival near our house. All of these things could be "normal" in any family - special needs or no special needs.
So where does Apraxia fit into all of this? Well, it's integrated into who our family is. We had to remind Bee-bee many times not to butt into Cha-cha trying to talk. We had speech yesterday that sort of turned into a disaster because he wanted a certain toy from Toys R Us that he perseverated on from the night before. We paused countless times so we could understand what Cha-cha was saying. We had to translate to Bee-bee what Cha-cha was saying, even though he said it and she refused to listen to him because he didn't say it directly to her. We repeated many times what we thought he said back to us. We asked him many times to speak up. We asked him many times to make eye contact. We asked him many times to repeat 2-4 times what he said so we could try to understand him. We sat through at least 5 screaming in frustration tantrums today alone. Do "normal" families have to go through this? They probably do, just I don't know to what extent, because this is our "normal."
Saturday, May 11, 2013
Day 11 - Getting Ready
Day 11 of Better Hearing and Speech Month
Getting Ready!
I just printed out 100 Business Cards and I'm getting ready to cut ribbons to attach so I can pass them out to family, friends and coworkers on Tuesday. I don't think Cha-Cha has a clue what it's all about, but I'm excited to be a part of helping others understand what Apraxia is. :)
Friday, May 10, 2013
Day 10 - Siblings
Day 10 of Better Hearing and Speech Month
Siblings
If you google search "special needs siblings" you come up with a bunch of really great articles and blogs related to children whose siblings have special needs. I came across two great sites - Siblings and Children with Special Needs and What Siblings Would Like Parents and Service Providers to Know.
Bee-bee didn't ask for a brother with special needs. Granted, Cha-cha's special needs are not as severe as others, but Bee-bee's life is a little different than her peers who don't have a sibling with special needs. For the most part, Bee-bee has been very positive about her brother. She's even attended more therapy sessions than Hubby thanks to EI before he was three and weekday afternoon speech sessions. She's attended some doctor appointments and watched her brother recover from surgery twice. She's heard me talk about my frustrations and she's seen my tears. She's been the biggest cheerleader to get Cha-cha to say words, and I've seen her throw mini temper tantrums when he can't say something right - especially when it's her name.
In the past year, we've really stepped up and offered opportunities for Bee-bee to do things on her own. Overnight trips to grandparents' houses, dance lessons, and soccer practice and games have been added into her life to give her space and her own time. Hubby and I also plan time for her to spend with us one on one and do special things with us so she doesn't feel left out. She only attends one of Cha-cha's therapy sessions a week (and she's expected to complete her homework during that time). When she complains, we often remind her that her brother now sits through her dance classes and occasional soccer game. I've also now made it a point to not have her come to Cha-cha's major doctor's appointments. Dentist and sick visits are fine, but now that they are both older, he should have the same privacy that she has with her doctor.
There have been some benefits to having a sibling that needs a little bit more attention. Bee-bee has incredible patience and has had the opportunity to watch specialists and therapists model techniques and at a young age, she could apply them. When Cha-cha was diagnosed, the doctor told us to come up with a nickname for Bee-bee so that her brother had a name for her so they could interact. That's how "Bee-bee" came to be. Bee-bee spent an entire hour in the pool with her brother saying, "Say Bee-Bee" when he wanted her to swim over to him under the water and say "Boo!" when she got to him. Within an hour, he had it down pat. They were both determined and they did it together. Within another hour, she had him saying "Ma-ma" for the first time. All because of her. We had spent 2 years 4 months and countless therapy sessions trying to get him to say it and it just took his big sister and a pool to get him to say it. When she was 5 and heading into Kindergarten, she told me, "I don't know if I'm suppose to study my Kindergarten stuff or my Speech Pathology stuff." At 5, she knew the difference between an utterance, an approximation and a word and she knew over 50 different ASL signs. She has the ability to be creative and entertain herself when I'm working with Cha-cha. On her own, she brought in her "My Brother is Very Special" book to her first grade class and read it to teach everyone what Apraxia is all about. She's walked in 2 Apraxia walks, and is registered for her 3rd (however, it was a tough lesson to learn that she wasn't going to be directly getting the $250+ she raised for the first walk).
When it is all said and done, I hope that Hubby and I have given her and her brother a "normal" childhood. I hope that she doesn't dwell on the negatives of having a brother with special needs, but that it teaches her to be more understanding of others and maybe even spark a career in a helping or medical profession.
Siblings
If you google search "special needs siblings" you come up with a bunch of really great articles and blogs related to children whose siblings have special needs. I came across two great sites - Siblings and Children with Special Needs and What Siblings Would Like Parents and Service Providers to Know.
Bee-bee didn't ask for a brother with special needs. Granted, Cha-cha's special needs are not as severe as others, but Bee-bee's life is a little different than her peers who don't have a sibling with special needs. For the most part, Bee-bee has been very positive about her brother. She's even attended more therapy sessions than Hubby thanks to EI before he was three and weekday afternoon speech sessions. She's attended some doctor appointments and watched her brother recover from surgery twice. She's heard me talk about my frustrations and she's seen my tears. She's been the biggest cheerleader to get Cha-cha to say words, and I've seen her throw mini temper tantrums when he can't say something right - especially when it's her name.
In the past year, we've really stepped up and offered opportunities for Bee-bee to do things on her own. Overnight trips to grandparents' houses, dance lessons, and soccer practice and games have been added into her life to give her space and her own time. Hubby and I also plan time for her to spend with us one on one and do special things with us so she doesn't feel left out. She only attends one of Cha-cha's therapy sessions a week (and she's expected to complete her homework during that time). When she complains, we often remind her that her brother now sits through her dance classes and occasional soccer game. I've also now made it a point to not have her come to Cha-cha's major doctor's appointments. Dentist and sick visits are fine, but now that they are both older, he should have the same privacy that she has with her doctor.
There have been some benefits to having a sibling that needs a little bit more attention. Bee-bee has incredible patience and has had the opportunity to watch specialists and therapists model techniques and at a young age, she could apply them. When Cha-cha was diagnosed, the doctor told us to come up with a nickname for Bee-bee so that her brother had a name for her so they could interact. That's how "Bee-bee" came to be. Bee-bee spent an entire hour in the pool with her brother saying, "Say Bee-Bee" when he wanted her to swim over to him under the water and say "Boo!" when she got to him. Within an hour, he had it down pat. They were both determined and they did it together. Within another hour, she had him saying "Ma-ma" for the first time. All because of her. We had spent 2 years 4 months and countless therapy sessions trying to get him to say it and it just took his big sister and a pool to get him to say it. When she was 5 and heading into Kindergarten, she told me, "I don't know if I'm suppose to study my Kindergarten stuff or my Speech Pathology stuff." At 5, she knew the difference between an utterance, an approximation and a word and she knew over 50 different ASL signs. She has the ability to be creative and entertain herself when I'm working with Cha-cha. On her own, she brought in her "My Brother is Very Special" book to her first grade class and read it to teach everyone what Apraxia is all about. She's walked in 2 Apraxia walks, and is registered for her 3rd (however, it was a tough lesson to learn that she wasn't going to be directly getting the $250+ she raised for the first walk).
When it is all said and done, I hope that Hubby and I have given her and her brother a "normal" childhood. I hope that she doesn't dwell on the negatives of having a brother with special needs, but that it teaches her to be more understanding of others and maybe even spark a career in a helping or medical profession.
Thursday, May 9, 2013
May 9th - Terminology
Day 9 of Better Hearing and Speech Month
Terminology
Today I found this on the Apraxia-Kids FB page and I edited it to put Cha-cha's picture on it.
It suits Cha-cha perfectly. "Apraxic" isn't an adjective that I use to describe him. It bothers me when people call children with apraxia, "apraxic" - many people (including parents of children with CAS) use it, but to me, it stings. It's not that I haven't accepted that my son has this challenge, but he's so much more than that and I'd rather use other uplifting adjectives to describe Cha-cha than "apraxic".
Terminology
Today I found this on the Apraxia-Kids FB page and I edited it to put Cha-cha's picture on it.
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