Where did the time go?! It 's Conference time again! This year we're headed to Pittsburgh, PA. It's a driving year, but it shouldn't take too long - 4 hours or so. The girls are joining us this year (Kyle is working at Camp Masaweepie again this summer, and Jakob is working and visiting friends this weekend-in Philadelphia; at least we're in the same state!)
We weren't able to get our reservations in quickly enough for the
primary hotel this year, so we're in the overflow hotel, the Omni
William Penn. The architecture and history of this place are pretty
cool.
We arrived earlier this year and already had a chance to check in and walk a few blocks to the convention center to register. The convention center has some lovely open spaces overlooking the river. Abigail was taken with the view and just wanted to sit and enjoy :)
After registering, we headed out to find dinner at a local restaurant. While we were there, we ran into a few friendly faces from home. We're looking forward to enjoying tomorrow when all of the sessions begin!
Thursday, June 27, 2019
Thursday, July 19, 2018
Inspired by Conference
One of the things that I am always considering, is how to allow Abbie to gain the greatest degree of independence. Sometimes it's the simplest things that get us stumped. We have been working on self-care and Conference got me motivated to just get.it.done! Abbie does well with lists/pictographs. I have made morning & evening routine lists, a list of directions for how to change her pad, and now.... (drum roll please)... the shower list! I made this when we came home, and it is working very well so far.
When I make these lists for her, I write them at her level. If your child is above this reading level, then make a list that works for them. If your child is below this reading level, then make a list that highlights the pictures and make it work for them. For example, she sometimes forgets to remove her socks and has stepped into the tub or shower with them on. I personalized her instructions with that note to not forget her socks. :)
We have found that Abbie does well with a combination of written instructions with some photos to reinforce/remind her of the step. I know she can already get dried off and dressed herself, so I didn't include that. I did forget one thing that she reminded me of, the little smarty pants. I forgot to add "close the shower door", so I'm going to see if I can write that in with marker, or if that doesn't stay I'll just modify and laminate a new one.
I have a laminating machine (so worth it!), so I laminate these and then place them where they are needed, or she will sometimes just carry them with her. I hung this in the kids' bathroom last night. She immediately had to try it out (yay!). This morning when she woke up, she had to try it out again :) I need to get another pump for body wash. I found the soap pumps on clearance for .48 cents. These are not the ones for foam, but for regular liquid soaps. They are thicker, and the foam mechanisms can't always handle the heavier texture & consistency of shampoo or body wash. I removed the labels and used permanent marker to relabel them.
Another great idea I got at conference was how to make sure they have the correct water temp. First, show them how to turn on the shower and adjust it to the temperature they like. Then, take 2 small pieces of electrical tape and place them in a line across the shower handle. (Make sure it's clean and dry when you tape or it won't stick very well!) Then they just have to line up the tape and they have the right temp-not too hot and not too cold. This works well if you have a single handle control. If you have double handles, you can do the same thing for each handle.
I hope this is helpful to other parents out there who just want to be able to say "take a shower", and know their child can get it done with minimal assistance or prompting (*sigh of relief*). Finally. Why didn't I think of that?
When I make these lists for her, I write them at her level. If your child is above this reading level, then make a list that works for them. If your child is below this reading level, then make a list that highlights the pictures and make it work for them. For example, she sometimes forgets to remove her socks and has stepped into the tub or shower with them on. I personalized her instructions with that note to not forget her socks. :)
We have found that Abbie does well with a combination of written instructions with some photos to reinforce/remind her of the step. I know she can already get dried off and dressed herself, so I didn't include that. I did forget one thing that she reminded me of, the little smarty pants. I forgot to add "close the shower door", so I'm going to see if I can write that in with marker, or if that doesn't stay I'll just modify and laminate a new one.
I have a laminating machine (so worth it!), so I laminate these and then place them where they are needed, or she will sometimes just carry them with her. I hung this in the kids' bathroom last night. She immediately had to try it out (yay!). This morning when she woke up, she had to try it out again :) I need to get another pump for body wash. I found the soap pumps on clearance for .48 cents. These are not the ones for foam, but for regular liquid soaps. They are thicker, and the foam mechanisms can't always handle the heavier texture & consistency of shampoo or body wash. I removed the labels and used permanent marker to relabel them.
Another great idea I got at conference was how to make sure they have the correct water temp. First, show them how to turn on the shower and adjust it to the temperature they like. Then, take 2 small pieces of electrical tape and place them in a line across the shower handle. (Make sure it's clean and dry when you tape or it won't stick very well!) Then they just have to line up the tape and they have the right temp-not too hot and not too cold. This works well if you have a single handle control. If you have double handles, you can do the same thing for each handle.
I hope this is helpful to other parents out there who just want to be able to say "take a shower", and know their child can get it done with minimal assistance or prompting (*sigh of relief*). Finally. Why didn't I think of that?
Sunday, July 15, 2018
A Neverending Story
I wish that Conference could last longer. The dances were AMAZING! The presentations were WONDERFUL! The new friends we met and made are AWESOME! Our learning never really ends, though, does it?
Can you tell that we enjoyed ourselves? ;)
As for David, he attended several sessions on financial planning, Special Needs trusts, ABLE accounts, and what to do once you have them set up. I'm sure he wouldn't mind sharing what he's learned. Just send us a message and we'll do our best to get back to you.
We selected a flight home for very early tomorrow morning. It is more economical to not fly home on Sundays. So, now we have a little time to ourselves to relax, to absorb some of that vast amounts of information we've been hearing the last few days, and to go to bed early.
We braved down town Dallas again this afternoon for lunch. We headed out from the opposite side of the building than last time, and had no issues this time around. We found an excellent local grill, with fantastic service and yummy food (the Pressbox Grill). It is hot, Hot, HOT out there! We've been cool inside all weekend, but the short less-than-10-minute walk had us ready to run back into the air conditioning. Today it's a balmy 100 degrees here. Tonight's low here is supposed to be 82. Tomorrow when we head out at 4:45 a.m., it's still going to be in the mid-80's.
We're looking forward to getting home to see the kids. This journey home has a layover in Dulles (in Washington, DC), and should be just enough time to catch a quick lunch before our last flight. We hope you enjoyed following along with us, and we look forward to seeing you all in Pittsburgh next summer!
Can you tell that we enjoyed ourselves? ;)
As for David, he attended several sessions on financial planning, Special Needs trusts, ABLE accounts, and what to do once you have them set up. I'm sure he wouldn't mind sharing what he's learned. Just send us a message and we'll do our best to get back to you.
We selected a flight home for very early tomorrow morning. It is more economical to not fly home on Sundays. So, now we have a little time to ourselves to relax, to absorb some of that vast amounts of information we've been hearing the last few days, and to go to bed early.
We braved down town Dallas again this afternoon for lunch. We headed out from the opposite side of the building than last time, and had no issues this time around. We found an excellent local grill, with fantastic service and yummy food (the Pressbox Grill). It is hot, Hot, HOT out there! We've been cool inside all weekend, but the short less-than-10-minute walk had us ready to run back into the air conditioning. Today it's a balmy 100 degrees here. Tonight's low here is supposed to be 82. Tomorrow when we head out at 4:45 a.m., it's still going to be in the mid-80's.
We're looking forward to getting home to see the kids. This journey home has a layover in Dulles (in Washington, DC), and should be just enough time to catch a quick lunch before our last flight. We hope you enjoyed following along with us, and we look forward to seeing you all in Pittsburgh next summer!
Let's Get Creative
The last session I attended today was by Ds mom Kate Dougherty. She is the President and Founder of 'Down Country'. She spoke about using creativity in our thinking when using technology with our kids. There are so many free and inexpensive apps and tools we now have access to. I can't begin to reiterate her presentation, as it was a long series of web sites and tech tool information. I'll just list a few for you, and if you need more info, please contact me and I can send you the listing given on the compendium.
She advocates using whatever tools work for your child. Sometimes we hear specialists and/or therapists say that we should only use one program, but if something works for our kids and allows them to learn or communicate, then use them! Every child is unique, and every learning need will be unique. It seems like sometimes it is forgotten that the I in IEP means individualized.
Lingraphica
TalkPath Therapy
TherapyAphasia.com
learningtools.donjohnston.com
She advocates using whatever tools work for your child. Sometimes we hear specialists and/or therapists say that we should only use one program, but if something works for our kids and allows them to learn or communicate, then use them! Every child is unique, and every learning need will be unique. It seems like sometimes it is forgotten that the I in IEP means individualized.
Lingraphica
TalkPath Therapy
TherapyAphasia.com
learningtools.donjohnston.com
Health vs. Wellness
This morning's first session was on Wellness in Adolescents and Adults with Down syndrome, but most of the information easily applies to all ages. Dr. Chicoine, the Medical Director of the Adult Down Syndrome Center in Park Ridge, IL, was the presenter for this topic. He discussed several issues such as the difference of health vs. wellness, 'the groove', chronological difficulties, and involvement in health plans.
When he talks about health, it's really about what doctors, professionals, and care givers do for their clients with Ds. Health issues can be things such as thyroid, gastro, neurological, psychological, etc. Health interventions are what we do to correct the physical and mental problems our kids may face. Wellness, on the other hand, looks at the whole person, and it is something that is planned and done with the clients. Wellness is looking not just at physical well being and behaviors, but looking at how the physical challenges and emotional needs work together to create the whole person. We heard a recorded interview from an adult with Ds, and he spoke of his wellness by citing his exercise, eating habits, healthy relationships, his job, and his happiness with himself and his life.
Next up is a topic near and dear to my heart: the Groove. Have you seen the Walt Disney movie the Emperor's New Groove? There's a character in the movie that states "Beware the Groove...". This is when our kids create a habit, and need to complete those circumstances or behaviors over and over again. This isn't all bad! Dr. Chicoine noted that our kids often are very good workers at jobs that require precise or repetitive tasks, because they develop a groove.
There are times, though, when the groove can prove detrimental. His example given was of a young adult that felt compelled to complete one task before beginning another; so much so that he would forego necessary bathroom breaks in order to finish school papers. As you can imagine, this caused accidents in High School, and the young man then had difficulties with peers, as they saw him as unable to control himself. Working with him, Dr. Chicoine created a short video of him doing homework at home. He worked for 30 seconds, then said aloud "I need a bathroom break", and walked out of the picture. He viewed this video multiple times, and was able to create a new groove to follow.
As many of the presenters did, Dr C. noted that our kids are often very visual learners. Making short videos, or watching videos, of tasks and social stories can greatly benefit our kids.
Chronological difficulties also often come into play with our kids. For example, my daughter remembers quite well when David and I took an airplane to another conference. However, she can't really differentiate when that happened. For her, she'll say 'yesterday' or 'last week'. This is very typical, (I was very relieved to hear we are not alone) of kids with Ds. Their memories are excellent, but often their chronological sense is not as keen. This can cause problems, sometimes. The example given was the client that secured a job, and told the new employer that staff pushed him. Staff did push him at his job, but it had happened 10 years previously. All well and good, but now the employer has tagged him as a behavioral problem for lying.
These examples were given to demonstrate how we need to look at Wellness, the whole picture-the whole person-the whole situation, when planning for our kids. Everything is connected and wrapped together in a connected chain of events, experiences, and needs.
The Adult Down Syndrome Center in IL has created many videos for clients on many topics that are FREE to view and use. They use clients from the clinic, as they have found that peer modelling also works better than just having a stranger tell them what to do.
I would highly suggest taking a look at their offerings at www.advocatehealth.com/health-services/adult-down-syndrome-center/ to view their resources and video gallery. You can also search "Seeing is Believing" by Tom Buggey. This series was made for kids with autism, but they can work for any kid in need of video modelling.
When he talks about health, it's really about what doctors, professionals, and care givers do for their clients with Ds. Health issues can be things such as thyroid, gastro, neurological, psychological, etc. Health interventions are what we do to correct the physical and mental problems our kids may face. Wellness, on the other hand, looks at the whole person, and it is something that is planned and done with the clients. Wellness is looking not just at physical well being and behaviors, but looking at how the physical challenges and emotional needs work together to create the whole person. We heard a recorded interview from an adult with Ds, and he spoke of his wellness by citing his exercise, eating habits, healthy relationships, his job, and his happiness with himself and his life.
Next up is a topic near and dear to my heart: the Groove. Have you seen the Walt Disney movie the Emperor's New Groove? There's a character in the movie that states "Beware the Groove...". This is when our kids create a habit, and need to complete those circumstances or behaviors over and over again. This isn't all bad! Dr. Chicoine noted that our kids often are very good workers at jobs that require precise or repetitive tasks, because they develop a groove.
There are times, though, when the groove can prove detrimental. His example given was of a young adult that felt compelled to complete one task before beginning another; so much so that he would forego necessary bathroom breaks in order to finish school papers. As you can imagine, this caused accidents in High School, and the young man then had difficulties with peers, as they saw him as unable to control himself. Working with him, Dr. Chicoine created a short video of him doing homework at home. He worked for 30 seconds, then said aloud "I need a bathroom break", and walked out of the picture. He viewed this video multiple times, and was able to create a new groove to follow.
As many of the presenters did, Dr C. noted that our kids are often very visual learners. Making short videos, or watching videos, of tasks and social stories can greatly benefit our kids.
Chronological difficulties also often come into play with our kids. For example, my daughter remembers quite well when David and I took an airplane to another conference. However, she can't really differentiate when that happened. For her, she'll say 'yesterday' or 'last week'. This is very typical, (I was very relieved to hear we are not alone) of kids with Ds. Their memories are excellent, but often their chronological sense is not as keen. This can cause problems, sometimes. The example given was the client that secured a job, and told the new employer that staff pushed him. Staff did push him at his job, but it had happened 10 years previously. All well and good, but now the employer has tagged him as a behavioral problem for lying.
These examples were given to demonstrate how we need to look at Wellness, the whole picture-the whole person-the whole situation, when planning for our kids. Everything is connected and wrapped together in a connected chain of events, experiences, and needs.
The Adult Down Syndrome Center in IL has created many videos for clients on many topics that are FREE to view and use. They use clients from the clinic, as they have found that peer modelling also works better than just having a stranger tell them what to do.
I would highly suggest taking a look at their offerings at www.advocatehealth.com/health-services/adult-down-syndrome-center/ to view their resources and video gallery. You can also search "Seeing is Believing" by Tom Buggey. This series was made for kids with autism, but they can work for any kid in need of video modelling.
Don't Stop Short
Today is the last day of Conference. :( Unfortunately, we have seen many folks already packing up and preparing to leave or catching taxis home. I understand that many folks work and can't take Monday off, but I would encourage anyone who attends to try and catch a later flight or ride home so that they don't miss the last few sessions.
Something new to us this year is that they are not having a closing! We were very surprised and disappointed. The closing was always a lot of fun, and where they 'officially' announced the location of the following year's Conference. For those of you who haven't heard yet, it is planned for late June of 2019 in Pittsburgh, PA, where Dr. Vellody is based. We'll be heading there with most, if not all, of the family next year since it will be within a handy driving distance of Rochester. I highly encourage all of our local area friends who can make it to attend. For those of you who really like to plan ahead, the 2020 Conference is scheduled to be held in the South. I'll refrain from ruining the surprise of exactly where for you, for now :)
The vendors have closed up shop and no products are available today, but there are still two sessions. They begin a bit earlier (8:30 instead of 9:00 a.m.) to give people a chance to leave a bit earlier, too. We've made a few more friends from a few more places. California, Texas, Minnesota, and Illinois.
On today's agenda is a Wellness session and Creativity with Technology for me, and Beyond setting up the Special Needs Trust; and Awareness, Preparedness, and Prevention Safety for David. We'll continue to keep you posted.
Something new to us this year is that they are not having a closing! We were very surprised and disappointed. The closing was always a lot of fun, and where they 'officially' announced the location of the following year's Conference. For those of you who haven't heard yet, it is planned for late June of 2019 in Pittsburgh, PA, where Dr. Vellody is based. We'll be heading there with most, if not all, of the family next year since it will be within a handy driving distance of Rochester. I highly encourage all of our local area friends who can make it to attend. For those of you who really like to plan ahead, the 2020 Conference is scheduled to be held in the South. I'll refrain from ruining the surprise of exactly where for you, for now :)
The vendors have closed up shop and no products are available today, but there are still two sessions. They begin a bit earlier (8:30 instead of 9:00 a.m.) to give people a chance to leave a bit earlier, too. We've made a few more friends from a few more places. California, Texas, Minnesota, and Illinois.
On today's agenda is a Wellness session and Creativity with Technology for me, and Beyond setting up the Special Needs Trust; and Awareness, Preparedness, and Prevention Safety for David. We'll continue to keep you posted.
Saturday, July 14, 2018
Crunching Some Numbers
Whenever professionals talk about our kids, they are so fond of throwing numbers and statistics at us. At least, that has been our experience. Usually they're along the lines of "about 40% of kids with Ds have heart problems" (by the way, this means that MORE than half of kids with Ds do NOT have heart issues. It's all in the perspective...).
Of course, we tend to focus on the issues and concerns that may face our own daughter, but there were a few numbers that caught my attention. For instance, about 15% of kids with Ds will have celiac disease. Typical population is about 2%. Approximately 80% (wow!) of people with Ds have sleep apnea to one degree or another. It's recommended that all kids with Ds should have a sleep study by age 4 for a baseline. Between 15-20% of people with Ds have hypothyroid issues. That's 30-40 times the rate of the typical population. Again- "wow".
Now the better news. Alzheimers, contrary to what has been claimed, is much less common in the Ds population than thought. Actual research shows that at 40 years of age, about 10% of people with Ds will be affected. At 50 years, about 20%, and at 60, about 40%. I found that I sighed in relief, hearing actual medical studies done by Down syndrome clinics, instead of scary claims of 100% of people with Ds get Alzheimers. Often times, life changes and transitions can trigger behaviors that may present as similar to dementia. We need to be aware of the bigger picture of what is happening in the lives of our loved ones with Ds, and what may have triggered new behaviors, to help diagnose problems.
Some good news is that our kids don't seem to get soft tissue cancers, have much better outcomes with chemo when diagnosed with AML, have an 80% long term success/health rate when getting either AML or ALL (types of leukemia) and tend to have few dental cavities. Cool, huh? There are new medical and growth guidelines for people with Ds, too, as recently as 2015. I would hazard a guess that most of our pediatricians don't utilize the newest iterations. I know a few questions I'll be asking when we get home :)
You can find some great info (and lots of numbers!) on many health subjects if you log into www.chp.edu/dscpodcast
Of course, we tend to focus on the issues and concerns that may face our own daughter, but there were a few numbers that caught my attention. For instance, about 15% of kids with Ds will have celiac disease. Typical population is about 2%. Approximately 80% (wow!) of people with Ds have sleep apnea to one degree or another. It's recommended that all kids with Ds should have a sleep study by age 4 for a baseline. Between 15-20% of people with Ds have hypothyroid issues. That's 30-40 times the rate of the typical population. Again- "wow".
Now the better news. Alzheimers, contrary to what has been claimed, is much less common in the Ds population than thought. Actual research shows that at 40 years of age, about 10% of people with Ds will be affected. At 50 years, about 20%, and at 60, about 40%. I found that I sighed in relief, hearing actual medical studies done by Down syndrome clinics, instead of scary claims of 100% of people with Ds get Alzheimers. Often times, life changes and transitions can trigger behaviors that may present as similar to dementia. We need to be aware of the bigger picture of what is happening in the lives of our loved ones with Ds, and what may have triggered new behaviors, to help diagnose problems.
Some good news is that our kids don't seem to get soft tissue cancers, have much better outcomes with chemo when diagnosed with AML, have an 80% long term success/health rate when getting either AML or ALL (types of leukemia) and tend to have few dental cavities. Cool, huh? There are new medical and growth guidelines for people with Ds, too, as recently as 2015. I would hazard a guess that most of our pediatricians don't utilize the newest iterations. I know a few questions I'll be asking when we get home :)
You can find some great info (and lots of numbers!) on many health subjects if you log into www.chp.edu/dscpodcast
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