Category Archives: augmentative communication

Augmentative Communication

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*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!

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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!

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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

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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!

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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

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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!

Preparing for the holidays with special needs children

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The holiday can be an over-whelming time for many people.  Those of us, who have special needs children, find that our children can react to this busy time of year and get stressed as much as we do.

As a Mom to a special needs child, I understand that the needs of each child are different and each child responds differently to particular situations.

We want everyone to enjoy their time with family and friends this year and every year.

There are many ideas we can try, to help get everyone through this holiday season.  Please remember, each child is different.  What works for one, may not work for another.  Keep trying different ones to find which of them work best for you and your family.

As the holidays are approaching, try scheduling activities with some distance between them.  Being on the go constantly can result in ‘sensory overload’.  You know how much sleep your child needs at night, to get through the day and to not tire too early before festivities begin.

Let family and friends know ahead if there are any special things or accommodations needed before arriving.  If your child needs a place to retreat to so they can calm down and gather themselves together before continuing on with the event, let them know.  If there is a particular diet for your child or extra things are needed for them to enjoy the meal with everyone, be prepared.  Remember any and all medications needed for the time away from home as well.  Don’t assume the host’s will have all you need, communicate prior and figure out what you will need to bring/supply for your child.

Talk to your child about what’s coming up and what the day/evening will involve.  Help prepare them with what to expect.  Let them know who’s going to be there; particularly if there is/are favourite guest(s) attending.  Assure them that if they get tired and want to go home, it’s ok.  Remind your child about these events in the weeks leading up to it, so they can prepare themselves mentally as well.  Perhaps having a ‘countdown calendar’ would be an idea that may work for your child.  Putting a sticker on each day at the end of the day as it passes.

If your child likes to help pick out clothes to wear each day, the day before, involve your child in what they’d like to wear to the event.  Try not to make too much of an issue if they don’t want to wear what you want them to.  What they’re wearing is not as important as spending time with family and friends.  Your family and friends should hopefully understand and will surely be happy that you are there whatever the dress.

Talk to your child about what’s expected of them as well.  Using manners, whether it may be a gesture, picture card, sign language, a hand held sign with Thank you on it…whatever will work for your child.

If you can only stay for a short period of time, let your family/friends know.  Perhaps they can arrange or schedule the main ‘event’s’ while you’re there.  Do not feel bad for having to leave early.  You know yours and your child’s limits.  It’s better to be there a short time and it be a wonderful time, than to stay longer and have to deal with a tired, over-stimulated child.  We want this time to be fun and happy for everyone!

Keep an eye on your child.  Watch how their doing and how they’re reacting to the event.  This way, you can keep on top of any possible issues and can be on top of any problem that you may see brewing.  Bring some familiar things from home for the child to play with and/or hold for comfort and assurance.

Arrange a time and/or signal for your departure.  Even if it means missing some of the festivities, leaving while everyone is happy, is good.  If you feel things are going well, and feel comfortable extending your visit by a little, then go for it.

If you are the one hosting the event at your house, designate an area/room that is off limits to others, so you have a quiet place for your child to go if a break is needed.  Having an extra pair of hands available, someone who you and your child are comfortable with to help out is a great idea as well.

If you’re able to have that extra help, just remember to stay calm, whatever situation may arise.  Knowing and seeing that you are calm will help your child, as well as family/friends who may be unsure of what’s happening.  Do not be afraid to ask for help if you need it, after all what is family for J

Be prepared to be tired!  Don’t over-plan things, worry and rush around.  Plan your time, get organized, things will go much smoother than you probably think they will.  Each of you; your child, your spouse, yourself and your other children will be quite tired.  Make sure the next day is a ‘down’ day, or a slow day, so everyone can take it easy and let the memories of the previous day’s events sink in and be enjoyed.

Take some time the following day to look back and see how things went.  Were there any changes that you think should be made?  If things didn’t go too well, or there were a couple situations, think about how you could change it or prepare for it, to make it better for everyone next time.

This seems like so much information and so much to think about, but most of us already know as parents, a lot of this becomes almost second nature in time.  This seems like a lot of work, but you’ll be a pro in no time and have every event become a wonderful memory for you all.

If you have any comments, other ideas that work for you and may work for others, please share them with us.  We would love to hear them.

Merry Christmas!

Renée MacLachlan

Buying for a child with special needs & preparing for Christmas!

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It’s that time of year again.  It’s come upon us pretty quick this year, I think. :)

Many people, family and friends, as well as us as parents, sometimes have a hard time thinking what to get for Christmas, Birthdays etc.

This particular post on the blog will be a ‘working post’, in other words, as I find more information that will be helpful and useful, I will continue to add to it.

There are many articles available for viewing online about preparing your child for Christmas.  I will be sharing some of those with you also.

To begin with, I have a couple links to some toy guides that are aimed at children with different abilities.

Toys R Us Toy guide for differently-abled children

Toy Industry Foundation – Let’s Play Guide – A guide to toys for children with special needs (give this a min to open, it will open in Adobe)  If you don’t have Adobe you can go the site here and click on Play Guide.

 

 

I will also be adding my own personal ideas and thoughts to help you have a wonderful holiday with your children.

Stay tuned for more!

Is your child getting the calories needed to get through the day?

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I don’t think we really think about this question often, unless a reason appears.

We just figure, hey! our child is eating, all is good!…right?  We sometimes don’t see the signs, and the ‘hidden’ signs that perhaps are indicating there may be an issue.

I am not a nutritionist, I am a Mom with a special needs child and this is my little story with some information I have found out as well.  My hope is that perhaps it may make you take a second look at your children and see that they indeed are getting the proper nutrients and calories to give them good growth.

I will start with a little information regarding my son and how this came about.

My son is 12yrs old.  He has a rare syndrome called Meckel Syndrome, as some of you have read on the ‘About Me’ page here on my blog.  We all have witnessed and are witnessing the growth of our children.  We have seen the growth spurts and plateaus over the years.  It’s almost as if one day you wake up, and wow! all of sudden they have grown out of everything they own, they have advanced in mind, body and spirit, and we wonder and realize…When did this happen? You just had that on the other day and now it won’t fit?  What did you say to me?  Where did you learn that word?  lol

Our ‘babies’ are growing! :)

My son had been on a plateau for so long.  Until a year ago, he had pretty much worn the same size clothes for about 3yrs, had some advances in communication, had no interest in trying to do some of the things I’d been trying to work with him on and really didn’t seem to care if he tried or did something himself, he was content to let/have someone else help him or do it for him.  Don’t misunderstand me, he is a happy boy and of course we didn’t ‘fold’ into him all the time.

As parents of special needs children, it’s frustrating at times with all the things we have/need/should do with our children.  We all have those days where we just don’t want the frustration and upset that sometimes goes with getting them to learn/do what they must.

This past year, my son has made leaps in a number of areas!  Communication, growth, drinking and much more.  He has always been small/short for his age, and is still considered small for his age, but he is now 4′ 1.5″!  He weighs between 60-65lbs, likely closer to 65lbs now.

Until this past summer, growth and nutrition seemed to still be on that plateau.  After a holiday out to Nova Scotia to visit family, most of them had only seen pictures of Patrick, not met him, he started to mention that he was tired all the time. (It was also his first plane ride)

I didn’t think to much of it at first, perhaps it was just the pace of the our first big holiday together and seeing everyone and keeping busy.  A little bit later, come mid to late afternoon, he’s looking pale and would rather lie down to watch TV or do whatever.

It still hadn’t dawned on me, that with his growth this past year, I should perhaps look at his food and calorie intake.

After returning from NS, I missed all the home cooking.  The great meals and the ‘way of cooking’ as well.  Getting back to basics again.  I started buying fresh meat again, veggies and the like, to provide good, nutritious home cooked meals.  It’s not always easy cooking for one.

As Patrick was only able to eat baby food, I decided to start seeing if I could get him to try suppers with me.  Stick with me here now.  Patrick has always had an issue with textures of things.  He has a lot of gum in his mouth and it covers a good portion of some of his teeth.  He doesn’t chew much at all.  Therefore, most of his food was close to pureed.  He was able to handle small ‘lumps’, as he could ‘break them down’.

I had a mini chopper that had been stored in the closet for many years, not using it much except the odd time when I didn’t want to physically do onions by hand ;)   I decided to give it a try.  Suppers I cooked, I would put in the chopper for him.  ‘Chop’ it down to a consistency that I felt he would tolerate and eat.  He loves it, doesn’t like the sound of the chopper, but he knows it’s supper lol

He now likes to have more choice and variety for his meals and everything has to have either ketchup or parmasan cheese on it!!

It’s better for him, more work for me, but he’s getting ‘better’ vitamins and that’s what’s important.  But…

He’s still tired!!  By mid afternoon he’s tired and some days pretty pale.  Call me slow, maybe it was a Monday…who knows, but I started thinking…  His diet has been the same for the past 3 years!! Pretty much exactly!!  He’s grown so much this past year, maybe he’s NOT getting enough calories in a day to get him through it without getting tired.

A trip to the Pediatrition, some bloodwork and a call to CCAC (Community Care Access Centre) to have a Dietition come out and review his nutrition and calorie intake had given us some answers that hopefully will relinquish the problem.

We are awaiting a return visit of the Dietition, she will be coming this Friday.  In the meantime, some information she has passed on to me, based on the information she had collected from me, was that his Vitamin C & E are not enough, neither is Fibre and he’s only getting 30% of his Iron requirements.  Ding, Ding, Ding!!  Tiredness, paleness can be symptoms of low iron.  Bloodwork has been faxed to the Nephrologist and the Dietition, I’m curious to see what it reads.

Tiredness and paleness doesn’t always mean low iron.  There are other symptoms that can be a result of not getting enough nutrition and/or calories.  Some you may not see so clearly.

Take a look at your children, think about how much they have grown, or haven’t grown in the recent past.  Look at their food intake, what are they eating?  Is it the good stuff?  Are they eating balanced meals?  Getting all the food groups covered.  It seems difficult to do, and may even seem like a lot of food, but it’s not.  Combine good, healthy food and exercise, you have the makings of a strong, healthy child in body and mind!  Good nutrition helps the mind as well, helps children learn and absorb much more.

I KNOW it’s going to be tough trying to get all the required nutrition and food groups into a days worth of meals in the beginning.  In the long run, it will be so much better for Patrick, and it’s good for us too.  He will be a healthy young boy ready to take on his teens next year and all the changes that will come with that!  It’s already started LOL

If you notice or are concerned about your childs(rens) nutrition and/or calorie intake, consult your family Dr. or Ped.  For older children, talk to them first about their meals, find out how they’re feeling over all, do they find they have enough energy to get through the day?  Do they find it hard to absorb things at school? Do they feel hungry all the time or not hungry at all?  Are they just eating, because they know they have to or should?  Sometimes there are underlying disorders that our children may try to hide as well (Anorexia, Bulimia etc).  There are many questions you can ask.  If you have good communication with your child(ren), that’s awesome, things should go well and easily.  If not, speak with your Dr. about your concerns and perhaps what you could/should do to help them.

It should be interesting over the next while with the changes coming for us here.  I’m looking forward to the visit this Friday.  I’ll keep you posted! :)

Getting back on track!

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Well, life certainly does throw some curves at you, doesn’t it!

It’s been a busy past while.  Things are finally slowing down a little.

This past year, my son has grown so much.  He had seemed to be on a plateau for the past few years, and for whatever reason, he decided to ‘move on’.   It’s been wonderful to see!!

He’s outgrowing his clothes alot quicker!  lol

His communication is progressing wonderfully.  I’m currently in the process of updating his DynaVox.  He has now ‘advanced’ enough to use more of the features and vocabulary on it :) )  It will take a little while to do it, but it will be so much better for him and the navigation will be much easier!

With all the stresses of life, being tired and the like, I decided, enough is enough, and in September signed up for a Cardio Kickboxing Bootcamp.  I know!!!  You’re asking – what were you thinking?  LOL    It was fun!!  It was 3 days a week for 4 weeks.  Stress does many different things to people, to me? if puts on weight!!  With being a Mom/caregiver/super woman (lol) along with all the other roles I have, it’s tough to look after yourself alot.  So if I want to continue to be around, I really do need to start taking care of myself also!  All parents know that, especially those with special needs children.  Easier said than done indeed!

I have so many things coming to mind right now to update you on…where to start  lol

We went to NS this summer for holidays!  Sister & I took the boys.  Patrick’s first time on a plane and the first time many of the family out there, got to meet the boys in person!  It was great!

I was worried about take off and landing and the plane noises being loud for him.  He wouldn’t tolerate them.  My boy is growing up!!  He did awesome!! :) )  When the plane started moving to head for the runway, he was so excited and started clapping!  lol

WestJet was great as well!!  They really helped make things a little easier for us.  Having my sister and nephews there was a big help as well for me.  Patrick loves the boys, even if he doesn’t get to see them too often.

WestJet has some information for people traveling with special needs.  Some require forms to be filled out, but they do their best to accomodate everyone!  Using us as an example, Patrick obviously cannot fly by himself.  Our Ped. fill out one of the forms confirming that he would require an ‘attendant’ to fly.  WestJet agreed, approved and confirmed as well, within 24-48hrs.  It’s best to get the forms filled out as early as possible, some may require more extensive information.  With Patrick needing an ‘attendant’ to fly, his ticket would be the ‘usual’ price or whatever you’re purchasing the ticket for at that time.  As he is 12, he’s considered adult.  The ‘attendant’ pays only the taxes for their flight.  It worked out great for us.  It’s a big help financially, as many families know, sometimes expenses keep us from doing things, as well as the work it involves to do things like this with our kids.

That experience this summer has helped me become more confident and comfortable with planning future holidays with my son!  The first time is the toughest sometimes  lol

Oh, and Patrick LOVED it!!  He’s asking to go back!!  :) )

Alright…well I’ve lost my train of thought now    lol

I’ll sign off for now…and will be making an effort to pop in once  a week at least from now on! :) )

Have a wonderful day my friends!