How did you start your day? (updated)

First video blog! 🙂 They will get better I promise! 🙂

London Drop Zone 2012Click the ^above^ picture to watch this blog post!

Have you ever thought about what exactly you do in a day?

Have you ever thought about how easy your life is?   Easy you say? My life easy?

Take a moment and think about what you did this morning when you got up and started your day.

You got yourself out of bed – you went to the washroom – you brushed your teeth – you had a shower – you got dressed – you made coffee/tea – maybe you had time to read the paper or check emails before jumping into your car and heading to work, the gym, shopping or where ever.

Does any of this sound familiar at all? I’m positive some of it applies to many.

Now…imagine this…

You’re lying in bed awake, ready to get up.  But wait…you can’t!  You have to wait for someone to come help you get out of bed.

Perhaps you’d call out to someone to come help you…but wait…you’re not able to speak.  Maybe you use an augmentative communication device to speak for you, you might be able to use it to help you get someone.

Now…someone has arrived to help you get up.  Maybe they even need to help you get dressed.  Perhaps you need help using the washroom.  If you need help for these things, you’re going to need help in the shower as well, right?

What if you couldn’t eat anymore?  What if you could, but it wasn’t recommended you do, due to health risks it would cause if you did.  Imagine being fed through a tube in your nose or your stomach.  Not being able to taste food anymore!

Those a just a few thoughts for you to think about at the moment.  Stop and really think about it.  What if that was you?  How would you feel?

Now let’s see, based on the above questions, let’s surmise that you aren’t able to walk, so you would likely be in a wheelchair.  (Let’s make a little side note here that there are many types of disabilities and not all of them require use of a wheelchair or other assistive devices).  Let’s also assume that because you can’t eat orally, you have a g-tube with which you get your nutrition.

Did you walk to your car or to work or the gym today?   There are literally thousands of people who weren’t able to.  Have you ever thought about getting around in a wheelchair?   Think about some of the places you go and take a visual as to how accessible they are?  Are there ramps?  Automatic buttons for the doors?  That are in reach?  Are the doorways wide enough for your wheelchair?  Are the things you use everyday within reach for you?

Seems like a lot to think about so far doesn’t it?

On the other side of the coin so to speak, what if you were the one who was helping that person everyday?   Circumstances are different for everyone and every situation it’s true, but suppose you had to get someone else ready to for their day before you could get started with yours.  Oh wait, this is how you start your day.

What if you were the parent and this was your child?  There are thousands of families that do this everyday!  This is their life!

How would you cope/handle things?  Do you think you could?   Without complaining?

Imagine all the things you will have had to learn and the all the things you’ll continue to learn.  All the Doctors, therapists, nurses, teachers, suppliers of equipment and things your child needs.  All these people remember are multiples!! In other words, there are a number of doctors/specialists, there could be anywhere from 1-5 therapists, multiple nurses and teachers and a limited number of suppliers for your equipment and supplies needed.

Think about work.  Is your boss wonderful and patient enough to let you answer those calls from the school where you might be needed?  How about all the doctor’s appointments and tests/procedures your child may have?  What about the hospital stays?  Staying 24/7 at the hospital with your child because no one knows your child like you do!  No one there would understand your child’s communication either.  Who is the best advocate for your child?  YOU!!

watch the video for the rest….

Here is the link for Easter Seals Drop Zone 2013 🙂

http://my.e2rm.com/personalPage.aspx?registrationID=1810209&registrantPreview=1

Thank you so much!!

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Augmentative Communication

*Did you know….

  • that 1 in 10 Canadians has a speech, language or hearing problem
  • an estimated 4% of the preschool population has a significant speech or language disorder
  • 8% to 12% of school children have some form of speech or language impairment
  • communication disorders in school-aged children are often misdiagnosed as learning disabilities or behavioural problems, and can be very difficult to treat in later years.  Children with behavioural problems are ten times more likely than other children to have language disorders
  • a child should use 200 or more words by the time they are 2-3 years old and by the age of 4 1/2 their vocabulary should consist of approximately 2000 words
  • speech and language disorders are strongly related to failure in reading and writing
  • drop our rates in students with communication disorders is 43% compared to 23% in non-impaired students

    *The Ontario Association for Families of Children with Communication Disorders: http://www.oafccd.com/

 

What is Augmentative and Alternative Communication (AAC) and who uses it?

 

Augmentative, sometimes referred to as alternative communication (AAC) is a method of communication used by individuals with severe speech and language disabilities, those who have cerebral palsy, autism, ALS, suffered from a stroke, etc.

Some people have complex communication needs associated with a wide range of physical, sensory and environmental causes which restrict/limit their ability to participate independently in society. They and their communication partners may benefit from using AAC methods.

Having a severe speech problem affects many aspects of a person’s life. It may affect one’s ability to live in the community, direct one’s care, find employment, discuss sexual matters and report or prevent abuse

AAC is for those individuals who are unable to use verbal speech yet are cognitively able or when speech is extremely difficult to understand. These individuals will use gestures, communications boards, pictures, symbols, drawings or a combination of all of these. An individual would point to a single meaning picture – for instance if the individual was hungry, the picture may look like somebody eating. If the individual is also physically impaired, a head pointer may be worn to indicate the picture, which would relay the feeling.

The methods of AAC will vary and be personalized to meet the needs of the individual. Many forms of AAC will have an Assistive technology component, which will come in both high-tech and low-tech strategies. You don’t need special skills for understanding an individual who is using ACC, as the processes are self-explanatory.

AAC refers to ways other than speech that are used to communicate. Most people who use AAC have a variety of communication systems. Depending on their needs and skills they usually include a number of aided and unaided communication systems.

Unaided AAC systems might include:
Voice; nodding and shaking one’s head; facial expression; pointing or looking at desired objects; gestures; sign languages.

Aided AAC systems might include:
Communication displays (comprised of written words, letters or phrases, pictures or symbols); devices which speak or print out messages; call bells etc.

There are specialized AAC Services available to assist people in determining the AAC systems which best meet their needs and skills.

Here is a list of centres in Ontario for Augmentative Communication, http://www.accpc.ca/aboutaac-ontarioservices.htm

 

This information is for just that, information purposes only.   If you have questions and want more information, consult your Speech and Augmentative Communication Therapists.

A communication summer helps prepare for school!

Patrick’s Summer – 2010

Patrick had a busy summer.  Being a child that uses an Augmentative Communication Device called a DynaVox, Patrick was able to attend a new summer camp this year, Word Warriors.

Word Warriors was a 7 week camp, meeting every Tuesday morning at Thames Valley Children’s Centre for children using augmentative communication devices, to work on Core Vocabulary.

Core vocabulary is a relatively small number of words that constitute the vast majority of what is said in normal conversation.  With a few hundred words, a person can say over 80% of what is needed (Vanderheiden &Kelso, 1987).

Each week 2-3 core vocabulary words were used as ‘passwords’ to enter the room.  Stories and games were read and played that incorporated the words for the day, as well as words that were previously used.  The children were encouraged to participate as well, by asking and answering questions using their core vocabulary.

They had a great time!  Patrick really enjoyed and looked forward to going.

Patrick also had the opportunity to attend a Drama Camp again this year.  His first time was in 2008, this is his 2nd year.

This program is put on, again, for children using Augmentative Communication Devices, through Thames Valley Children’s Centre and The Original Kids Theatre Company.  There were 2 sessions, morning – for those attending for the first time, and afternoon – for those who have had experience already attending.

Patrick attended the afternoon sessions, going down to the theatre with one of his respite workers via para-transit, Monday to Thursday for a week.  Friday morning they put on the performances.

They did 3 plays.  Alice in Wonderland, The Right Nest and Wombat Stew.  Patrick played March Hare 2 in Alice in Wonderland, the Husband Bird in The Right Nest and the Emu in Wombat Stew.  Each child had their lines for the plays programmed into their communication devices prior to the camp.  Patrick reminded me everyday to go over his plays with him, so he could do his lines! All the plays were written and directed by one of the Original Kids.

Each child was paired with one of the Original kids for each play to help them along when necessary.  The first 3 days were spent rehearsing the plays.  Thursday was dress rehearsal day.  Friday morning both groups, morning and afternoon, put on their plays for family and friends at the Spriet Family Theatre, downtown in the Covent Garden market.

All the kids had a great time!  They received a certificate, a poster, a shirt, a program and a gerbera daisy.  Wonderful memories indeed!

These camps this summer have helped Patrick a lot with also preparing for school.  Using and getting more familiar with some core vocabulary will help a lot in communication, not only for school, but where ever he may be/go.

We have started working on our school time schedule for mornings and bedtimes to help get a head start on the routines he will be using for school.  He’s still tired, but there’s still a week to go.  He’s been counting down to school for 2 months!  We have a calendar I made up and we’ve kept track of all the camps, weekends with his Dad, appointments and when back to time is.  We mark each day off with an “X” as it passes and count how many till each event, including school.

He is excited and happy that school will be back soon!  He can’t wait to see his friends and the EA’s!

Heat wave!

WOW!  It’s been a warm one this week!  How are you making out with it?  How about the kids?

Since being on the TOU (time of use) for the hydro since May 1st, I’ve been trying to keep on track with doing things during the low peak hours, which ends up being the evenings after 9pm and/or weekends and holidays.  Hasn’t been working out too bad so far.
This week on the other hand, with the humidity…well, let’s just say, I’m doing not too bad I think.  I’m trying to keep the air off during the high peak hours and mid peak if tolerable.  I have to admit, it’s been on during some of those mid peak hours as well this week!

Word Warrior Camp started this past Tuesday at TVCC.  An 8 week, weekly summer camp for children with augmentative communication devices working on core vocabularly.  It’s the first time they’ve run a program like that with wide age range and varying degree’s of disabilities and communication.

I think it went well.  It moved a little slow at times, but it was fine for the first session and Patrick enjoyed it.

The children were to use the 3 words for that day as passwords to get into the room.  The words for Tuesday were good, bad & ready.

Stories and a couple activities were used in conjunction with those words for the morning.  It was an hour and a half long.  Some exercises were sent home for the kids to work on and play with over the next week.  There will be 3 new words added each week.

Patrick will miss next week, as he will be spending a week at his dad’s, but they have given me the itinerary for the missing week to work with him at home.

Next week begins the National Special Olympic Games here in London.  I am looking forward to them.  Opening ceremonies will be held Tuesday night at TD Waterhouse Stadium and free for everyone to come and enjoy as well!

As I mentioned previously, I will be helping with the opening and closing ceremonies, as well as marshalling for swimming and the Canada Aquatic Centre, Wed/Thur/Fri afternoon and Sat morning.

I have family arriving this weekend from NS to check out the games as well.  My Uncle coaches one of the softball teams and some of the athletics too.  My cousin participates in them and enjoys them very much!  It will be great to see them, as much as we’ll be able, with attending different venues and events, but that’s ok, I know everyone will enjoy themselves!! 🙂

It’s been quite a week and the summer is just beginning, lol.  More to come 🙂

How are your plans going this summer?  Anything interesting happening for you?  How are you keeping the kids busy and cool? lol

Have a great evening!!  I’ll be back 🙂

A busy summer coming

It looks like summer will be busy after all!  I can’t believe school will be done in a week and a half already!

I’m volunteering for the National Special Olympic Games this summer here in London, ON.  I will be a marshall for the swimming, as well as helping with the athletes during the opening ceremonies on the Tues night.  The games are the week of the 11th in July.

I have been helping with the marketing and promotions for the games too.  Attending events between now the games to make people more aware of the games, what’s going on and what its about.

Next week is orientation.  I have offered to arrive early to help out there as well, with registration, handing out uniforms etc…  I’m looking forward to the games, it will be a great time!

I have family coming down from NS to check out the games as well.  My uncle coaches some of the athletes in Halifax for baseball.  It will be great to see them as well 🙂

As for Patrick, he’d like to attend the drama camp with the Original Kids theatre again this year.  He attended 2 yrs ago and enjoyed it.  Not sure what plays they’ll do this year, but I’m hoping we are able to find another respite worker who will be able to attend with him, since Andrea is not able to this year.

We are also waiting to hear about a weekly camp for augmentative communication, working on core vocabulary.  It would be for 8 weeks, every Tues morning, starting July 6th.  It sounds like they’ve gotten enough interest to go ahead with the program, so we’re waiting to hear the final word.  I think it will be great for Patrick, and if necessary, I can attend that one with him.

Aside from spending a week with his Dad as well this summer, I’m hoping to get out with him to a few different places as well.  He wants to go to NS again, lol, we’ll see what the summer brings 🙂

What’s going on with you this summer? 🙂

The Teens have arrived!

13 – the beginning of the teen years.  Highschool comes sooner than later now.  More to think about and decide and prepare for with the coming ‘teen’ years ahead.

My son’s first birthday party, that was more than just family, was held this past saturday.  His birthday was the 14th.   He invited a few friends from school, 3 of them came.  One even showed up 35min early  lol  He had such a great time!  He really enjoyed himself.

I think it was also great for others in my family to see ‘another’ side of him they don’t get to see often.  I think they really enjoyed watching him and seeing him have such a great time! 🙂

Here he is blowing out the candles on his cake! 🙂  http://www.youtube.com/watch?v=74WbKVZ23rE

The decorations started Thursday night.  He helped put them up.  He helped fill the pinata.  He wanted to be involved in everything, it was so great to see.  🙂

It still makes me smile when I think of all the changes he’s gone through in the past year or so.  He’s quite the child and he’s mine 🙂    Years ago, much of this would have been difficult for him to ‘deal with’, so to speak.  He’s handling things so much better now, it’s wonderful to see!  I’m not saying it’s all perfect, but it’s still amazing and I am so blessed!

At the last team meeting at the school a few weeks ago, the topic of high school came up.  The meeting went great, and when it was discussed about high school, they were great about the ideas and suggestions on this topic and what to do.

A meeting date has already been set for the fall, for the next team meeting.  They are also going to invite a couple staff from the highschool and the board to attend, so any possible questions and such can be directed right to the source.  It sounds like one of the highschools in particular really takes an interest in the kids that are going to be attending.  They make visits to the school in grade 8 to meet the kids, find out about them, their needs and such.  I was impressed really.  I didn’t think they would do anything like that.  I hadn’t really thought about it really.  There is always something more and new to learn 🙂

I’m also going to plan visits to both highschools, to check them out, meet some of the staff and ask questions.  In one way I’m looking forward to it, in another, I’m thinking…wow…highschool already!! lol

I can see the ‘teenage’ years setting in already in some of the things he does and the way he acts at times lol   TEENAGERS!! Bring it on!!  lol

His communication is getting better and better.  He likes to spell things out now, rather than go through the pages on his DynaVox.  I’m going to be changing the layout of his box over the next while to more ‘keyboard’ and core based vocabulary to perhaps make communication even easier and quicker.  He spells some of the words phonetically and/or how he ‘hears’ them.  When pressing the screen, they don’t sound proper, but if you go and LOOK at what he has typed,  you can usually figure out what he means.  It’s alot of stopping what Im doing to go and see, but that’s ok.  I just love the fact he is communicating so much more 🙂

Well, it’s getting late, I think I’ll stop for now and catch you up some more over the next couple days.  I’m feeling good today.  I can feel myself getting energy back 🙂

Till then, have an awesome night!

🙂

Life’s growth spurts

WOW!  So much has gone on over the past few months.  I’m  almost at a loss as to where to begin.

This blog entry may be a little different from some of the others, but I just really need to write tonight to help get my thoughts and feelings out.  I apologize in advance if it seems kind of like it’s jumping all over, I’ll try to look back and make it look like some sort of sense afterwards lol

Well, Patrick is growing up!!  He’s going to be a teenager next month!! 13yrs old!!!  Where does the time go??  So much has changed with him over the past year, it’s been amazing!!  I’m so proud of him!  No matter what happens, what goes on or how I feel…I can look at him and my smile returns instantly!

He has been dealing with all the changes so well.  Years ago, he would not have tolerated everything that’s been happening so well.  His personality is blossoming, his communication is coming along so well, my baby’s growing up!

As some of you know, who go through similar situations, appointments can go in spurts at times.  It will seem like for a few months, that’s all you seem to do is run here and there, and the rest of the year, it’s intermittent.  It’s that time of year for us, and with all the advances he’s made, more have been added at this time as well.

Regular check ups with the Nephrologist, including a kidney ultrasound, blood work and a 24hr blood pressure monitor.

Dietition updates, revisions and suggestions for his growth, size and weight.

Regular check up with the Neurosurgeon including a CT scan and Shunt Series.

Dental check up which now requires a specialist appt and a ‘day surgery’ to be booked soon.

In visits with the school OT/PT, a referral to the Orthopedic surgeon had been done and now orthotics are being made.

As well, with him growing so much this past year, he has almost outgrown his seat in his powerchair, so a seating appointment was done as well, and a follow-up to that to be coming.

I also request 2x a year, a “team” meeting at the school.  A meeting where all the therapists, teachers, EA’s, community case managers etc, can be together in the same room and get updated on Patrick’s progress at once.  Either the principal and/or vice principal and sometimes someone from the school board attends as well.  That meeting will also be in 2 weeks.

Let’s see where to begin…updates…hmmm…

Nephrology:

24hr blood pressure to be rescheduled, waiting for a date still.  Ultrasound now shows, 2 cysts on one kidney, 1 on the other.  Hopefully the rate of growth is an indication of its progression and things will continue to be ‘slow’ with that regard.  As many of you may not know, with his syndrome, Meckel Syndrome, polycystic kidneys are typically known and usually the primary reason for loss of life, among other things.  Bloodwork was good, Iron still a little low, so he has been taking iron for a few months now.

Dietition:

Having not had a diet change in years and with his growth and the fact near the end of summer last year, he always complained of being tired, I had a dietition come in to ‘re-asses’ his needs.  After some blood work, a visit with the Ped, she came out and we discussed some concerns regarding his dietary needs.  With not eating ‘regular’ food like you and I, ‘baby food’ was not not meeting his growing needs.  He was lacking in a few vitamins, fibre, protein and iron.

Now taking Iron, a multi-vitamin and adding benefibre and sunflower oil to his meals, his blood work and his health have improved even more.  He is now just over 4 ft. tall and is weighing in at around 69lbs.  We will continue to monitor his needs and his weight, as he’s not as active as ‘most’ kids and we don’t want him to get too large and heavy for his size.  As well, for lifting etc…thank god for ceiling tracks, which I REALLY need to start using more lol

Neurosurgery:

It’s been about 4yrs or so since his last hospitalization for a length of time.  Woohoo!  Appointments coming up for the CT scan and Shunt series.  The shunt series is just an xray to take a look in his abdomen to see that there is enough length still on the end of the shunts to allow for his growth.   This one will be interesting to see because of how much he’s grown this past year.  He’s never needed an ‘extension’ put on previously, as there were issues with the shunts that had come up and they were just replaced.   Those appts are next week, and the first week of June is with the neurosurgeon.  Everything’s been good the past few years with these programmable shunts.  The odd concern with intermittent blockages here and there, but nothing that hasn’t seemed to work itself out so far.

Dental:

The dentist was very pleased to see how he was doing and how is teeth were, which was great and a great improvement from when he saw him previously, 4yrs ago.  When he was 5yrs old he had a gingivectomy done.  He had a lot of ‘gum’ in his mouth, it was covering his teeth etc. so they removed much of it.  Between then and now, 8 teeth were taken out by the Dr. and others have come out on their own.  It’s been noticed in the past few months, what looks like a double set of ‘eye’ teeth.  So a consult was done today with a specialist to look at taking one of the sets out.  Apparently one of them is still baby teeth.  So we await that call for the ‘day surgery’ for that.

Orthotics:

While using his standing frame at school and other various activities and therapy, it was noticed his feet were not ‘sitting’ correctly.  He does not weight bear hardly at all, and what little he does, he does it on his toes.  The only way he’ll stand flat foot is with sneakers on.  A referral to the orthopedic surgeon was made.  One of the first things he mentioned was how big he was for the seat on his powerchair  lol  I told him, we already had an appt to get that looked at and that it was noticed the previous week at another appt.  He suggested for his feet, we try some orthotics to help get his feet more ‘pliable’ to go into the proper position.  To stretch out those muscles behind his knees down to his feet.

He did great when we went for the ‘casting’!!  He’s come so far, as I said, years ago, he would not have tolerated this stuff, it would have made for some very difficult appointments.  He even picked out his own pattern for the orthotics.  First it was fish, then it was planets…then he saw a camouflage pair…well he got excited about those!!  So that’s what he chose  🙂  They will be ready next week as well! lol

Seating:

Some temporary adjustments were made to his seat, until we get a few more things sorted.  He has a little more growth left in the seat he has now, it’s been ‘lengthened’ to it’s max now.  The seat was also tilted back about 5 degrees or so, to help get his sitting straighter.  He ‘rolls’ his pelvis forward when he sits, and it is hoped that with the adjustments that will be made and some verbal prompting, he will pay more attention and sit up straighter in his chair.  It will of course help his posture, his health, and his breathing to name a few things.

He will need new foot plates for his chair to allow for the growth as well, so those are being looked at.  As well, once he gets his orthotics, a follow-up appointment will be necessary to make adjustments for those as well, so that his feet and legs are comfortable and not having any ‘pressure’ points while in his chair.  The orthotics will be worn at school during the day.  When school is done, we’ll work out a ‘schedule’ for wearing them to keep that going.

We are also looking at a possible new mounting system for his chair and his communication device.  We have had one appointment already to try out one, not really what we were hoping for.  Another will be at the centre end of May, and we’ll try that one out as well.  Only thing with this one at the end of May, it’s called the Mount n Mover, and if we decide it’s what we want/need and go for it, it will tie up our ADP funding for 3yrs.  So we want to make sure we get what’s best for his needs.

Well, that was long….and there is still more lol  I’m going to sign off for tonight, and I’ll update again later this week.

If you have any comments and/or questions, please feel free to ask, I’m always happy to hear from you and answer whatever I can, the best I can. 🙂

Good Night, dream sweet!