A great blog to share – Love That Max

For a while now, I’ve been following and receiving daily posts from Love That Max.

Max is a young boy with CP.  Read more about what happened to Max here.

Click here to read a little bit more about the Love That Max Blog.

Follow Ellen Seidman on twitter @LoveThatMax

Find them on Facebook

I have really enjoyed following the life and stories of Max and their family.  I know you will too!

Things are progressing

Evening Everyone,

Well, it’s been a couple of weeks since my last post, I apologize for that, it’s been quite busy, par for the course here, but still busy. :)

Let me see where I left off……..Oh yes…

4 of the 8 courses required for my Community Advocacy Certificate are done.  I wrote all 4 exams over the weekend, it took me about 20hrs to complete them all.  2 more courses start today, and the other 2 will begin April 1st.  These ones will be 5 weeks long.  We won’t have our marks for a couple weeks.  I’m curious and anxious to know how I did.  I feel like I’ve done well.

I have learned a lot, acquired much information and many resources that will certainly be an asset in helping others and being an even more effective Advocate!  I am enjoying it!

My first Accessibility Advisory Committee meeting for the City of London was last week.  It went well.  I was pleased and quite happy to hear about many of things that are happening regarding accessibility in our City.  I am now on a couple of sub-committees and looking forward to those as well.  Everyone was really nice and it was great having so many people in one spot that all shared a common passion and all working toward the same goal…to make our City more accessible!

I’ve been told and heard from others that London is ahead of the game when it comes to accessibility, ideas and having things implemented.  Something to be proud about indeed!

Last Thursday was also the day I toured another respite house.  This one was through the Salvation Army.  They have 2.  The house I toured could accommodate up to 8 children.  The house was nice, spacious, the whole place was accessible.  They have quite the area of land in behind where they have access to a pool, some walkways, tennis courts, fire pit and more, it was great to see.  I’m thinking Patrick will enjoy this house more than the others.  He is already asking to go and he hasn’t even seen it yet!  When the weather gets nicer, I’ll book Para-transit and we’ll go for a visit so he can see it.  I received my letter with the dates we were approved for, for respite.  One weekend in June, one weekend in July and a week in August, Patrick will also spend a week at his Dad’s (likely July) and he’ll attend Drama Camp in August as well.  It will be a busy summer for him…and for me! J

Las week was also the IPRC meeting at the high school and picking Patrick’s courses for September.  It went well.  We chose 7 courses for the year.  He will have languages, math, drama, vocal music, religion, science, and possibly visual art.  We’ll see how that goes.  If one of the courses doesn’t work for him, we’ll look at others at that time.

As some of you know, I request/ask for 2 meetings a year, what I call Team Meetings, one in the fall and one in the spring.  It’s a time where everyone involved with Patrick gets together and goes over what’s been going on, who’s doing what, goals, comments etc…  I have asked for our last one for this school year to be set for March.  I am waiting for a date on that.  Teachers, EA’s, therapists, Principal or vice, even agencies from the community that we have services with attend, as well as a representative from the school board when possible.  It’s a great opportunity for everyone to get caught up on Patrick and get a sense/idea of where we are at and where we are going and collaborating on what things will benefit Patrick.  With this year being the transitioning year for Patrick, I’m looking forward especially to this last meeting.

Thursday is Grad Photo Day!  I went out last night with my Mom and bought him a dress shirt and a tie for pictures, as they requested.  WOW, was he excited when I got it out for him to try on!! :) Of course I had to take a couple pictures, and he is a camera ham!  He loved it, and I posted a few on Facebook.  BOY! Does he look grown- up!  14 in June already!!  Years ago he didn’t like button up shirts.  He could put his fingers between the buttons and feel his skin and that wasn’t working for him!!  He doesn’t have a problem now it seems, maybe I can start buying button shirts for him now?  I’d have more selection to choose from too!! Lol

It’s amazing how much he has changed and grown the past couple years.  Even with everything he went through last fall, he’s not 100% yet, and I still worry we’re not out of the woods yet some days, but he’s doing well!

Next week is another follow-up with the Ophthalmologist.  I’m happy the Cornea Specialist doesn’t think surgery is necessary right now to remove the remaining damage, as long as it stays below his line of vision.  During the March Break, we will have a follow-up with Genetics.  14 yrs ago there was no blood test for Patrick’s syndrome, now there is.  It had to be sent away down to the states for the testing and to get the results; well they are in and apparently too complicated to tell me over the phone, so they’ve asked us to come and speak to them.  I’m curious about that appointment and what they will tell us.

My mind has drawn a temporary blank at the moment, I must be tired.  I think I will sign off for now and maybe go to bed early, tomorrow is another busy day.

Have a great evening my friends!! :)

2 months in

2 months into 2011, and what a busy time it’s been and is.

Multiple follow-ups from Patrick’s lengthy hospital stay last fall, and a few more thrown in with other referrals, thought to be considered and necessary.

Wait for it now………………………………

I’m in College!!!

I am registered at Lambton College and taking a Certificate Program, Community Advocacy.  February 1st, began with 4 courses of the 8 courses required for the certificate.  The first 4 this month are:  Community Advocacy Techniques (the only mandatory course for the certificate), Canada Pension Plan, Ontario Works Act, and Residential Tenancies Act – Part 1.  March courses will consist of:  Employment Standards Act, Residential Tenancies Act – Part 2, and Human Rights Ontario.  The last course, set to start Apr. 1st will be Ontario Disability Support Program.

The courses for Feb are 4 weeks long.  Mar and Apr’s courses are 5 weeks each.  For the current courses now, there are 25 assignments to be completed by the 25th of Feb, then an exam to be completed by the end of the month.  Assignments are 50% of your mark and the exam is the other 50%.

It’s alot of work, but I’m really excited at finishing this certificate.  The resources and information I’ve already learned are great!!  Quite useful for an advocate!  I have organized my bookmarks into folders and categories with each ‘topic’ and ‘field’ to help locate the resources much more quickly and easier.  I’m continually finding resources that will be very helpful when helping others.

There are other courses available, on other topics that are available to be taken, but only 8 are required for the certificate.  Aside from the Community Advocacy Techniques, being mandatory, you can choose from the rest of the list, courses you think will benefit you and be useful to the people you are/may be working with.

My first meeting with the Accessibility Advisory Committee for the city is next week.  I’m looking forward to that, meeting others on the committee and being able to have a voice on accessibility in the City.

As I mentioned in an earlier blog post, I was also going to tour a couple respite houses and see what they were like.  As of today, I have toured one and the other I will be touring next Thursday.  I know this is a good thing, it’s still going to take some getting used to, for myself and for Patrick, but I think it will be ok.  I’ve heard some nice things about the 2 remaining houses I’ve not seen yet.

I am also on a list to be called for a training date for our local Snoezelen Room.  The do the training once a month and I’m hoping the March date works out for me to attend.  February’s date found me already otherwise busy.  For those who don’t know what a snoezelen room is...

“Snoezelen or controlled multi-sensory stimulation is used for people with mental disabilities, and involves exposing them to a soothing and stimulating environment, the “snoezelen room”. These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance.

Originally developed in the Netherlands in the 1970s, snoezelen rooms have been established in institutions all over the world and are especially common in Germany, where more than 1200 exist. The term “snoezelen” (pronounced /ˈsnuzələ(n)/) is a neologism formed from the Dutch “snuffelen” (to seek out, to explore) and “doezelen” (to doze, to snooze).

Ideally, snoezelen is a non-directive therapy and can be staged to provide a multi-sensory experience or single sensory focus, simply by adapting the lighting, atmosphere, sounds, and textures to the specific needs of the client at the time of use. There is no formal focus on therapeutic outcome – the focus is to assist users to gain the maximum pleasure from the activity in which they and the enabler are involved. An advantage of snoezelen is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach.

Snoezelen is used for people with autism and other developmental disabilities, dementia, and brain injury.”

Knowing about this resource and having being able to be trained for the room, I feel will be a benefit to individuals/families that I am helping, should this be a resource that they may find beneficial.  Seeing and knowing what the room is like and does, will help me be more informed and perhaps alleviate any anxiety and/or answer any questions a family/individual may have regarding the Snoezelen Room.  :)

Next week is also the IPRC meeting at the highschool for Patrick.  Both Patrick & I will be in attendance.  We will be going over the transitioning for Patrick and picking his courses for the upcoming new school year.  Apparently, something all the highschools are doing now, is a $50 ‘student fee’ that is payable with registration.  I inquired what this fee was for and what it covered.  Some of the things included in that fee are a student card and a hard cover yearbook at the end of the year.  Ok…I can be cool with that  hahaha  :)

Once I find some time, I really need to sit and write about everything that happened and went on while Patrick was in hospital last fall.  I’m having a few concerns the past week that there may be some issues brewing again.  I’ve placed a call to the Neurosurgery team and am waiting for a phone call to update them and see what they’re thoughts are.

I will go into the rest later on…lunch time is almost over, its time to hit the assignments again.  I finished 2 more this morning! :)

Have a great day all!! :)

Hydrocephalus

 

Hydrocephalus comes from two Greek words:  ‘hydro’ meaning water and ‘cephalus’ meaning head.  Hydrocephalus was also commonly called ‘water on the brain’.

 

There are two types of Hydrocephalus, congenital (present at birth) and acquired (by injury, trauma to the brain).

 

Our brains are surrounded by a fluid known as CSF, (cerebral spinal fluid), which is constantly made and circulated.  CSF is produced in the ventricles, circulates through the ventricular system through the brain and is absorbed into the blood stream.  It has many functions.   It acts as a protective cushion for the brain and spinal cord.  CSF contains nutrients and proteins the brain needs for nourishment and normal function and also carries waste away from the surrounding tissue.

 

When there is a problem with absorbing the CSF into the bloodstream, it starts to build up in the brain causing swelling.  This swelling can lead to a multiple of symptoms including:  enlarged head (for babies), vision problems, lethargy, irritability, vomiting, headaches, balance problems and memory issues.  These symptoms are varied and varied in degree with each individual.

Other problems that can be associated with hydrocephalus and they vary from person to person. Some problems may be:

  • Learning disabilities. Although individuals are able to learn, they may require special modifications and assistance.
  • Memory deficits
  • Psychological deficits
  • Motor Skill disabilities
  • Vision problems
  • Hearing difficulties,
  • Seizures, and
  • Hormonal imbalances.
  • Sensitivity to sound, pressure and bright lights may also be associated with the condition.

Because each case is individualized, generalizations in this category are difficult to make.

 

When not treated immediately, Hydrocephalus can permanently damage the brain and cause physical and mental developmental problems.  If untreated, it can be fatal.

 

CT Scan and/or MRI are the tests done to check for or confirm Hydrocephalus.  These machines take pictures of the brain and ventricles to show swelling, flow issues, blockages and any other details that will help them determine the reason or cause of the symptoms.

 

Hydrocephalus is not curable, but treatable.  Typically, shunts are used to treat Hydrocephalus.  A shunt is flexible tubing that is inserted into the ventricle(s) and then fed to another region of the body, usually the abdominal cavity where the fluid can be absorbed.  It also can be fed to one of the heart chambers as well.  At the ‘top’ of the shunt, in between the skin and the skull a valve is placed, which regulates the CSF flow.  The valve has a pressure setting and once that pressure is reached, it kicks in and diverts the CSF to the other region and the CSF is then absorbed there.

 

There is another treatment for Hydrocephalus called, Endoscopic Third Ventriculostomy (ETV), but not everyone is a candidate for this procedure.  You can find more information on this procedure here: http://www.hydroassoc.org/education_support/faq#22

 

Shunts are still prone to issues.  They can become infected and/or become blocked.  If they become infected, they are removed, replaced and treated with antibiotics.  If they become blocked, and there is no infection, the part that is blocked, can usually be replaced.

 

When an individual’s health has been good for a period of time, check up CT Scans are done yearly (depending on individual) as well, a shunt survey, which is an x-ray to make sure there is enough tubing in the abdominal cavity for growth.  Depending on how quick the individual grows, the need for lengthening will vary.

 

Hydrocephalus is treatable.  Talk to your doctor if you have any concerns, they will refer you, if necessary, to a neurosurgeon for further assessment and treatment.

Below, is some helpful information on Hydrocephalus.

 

*Please note, this article is not intended for diagnosis, please consult your doctor if you have any comments, questions and/or concerns regarding yourself or an individual.  This article is meant for information purposes only.

 

Some of the information above and more can also be found at the following links.

 

Hydrocephalus Foundation Inc. – http://www.hydrocephalus.org/

910 Rear Broadway, Rt. 1

Saugus, MA 01906
Phone: 781-942-1161

 

Hydrocephalus Associationhttp://www.hydroassoc.org/

870 Market Street, Suite 705

San Francisco, CA 94102

Telephone: (415) 732-7040 / (888) 598-3789

Fax: (415) 732-7044

 

Medline Plushttp://www.nlm.nih.gov/medlineplus/hydrocephalus.html

 

Written by Renée MacLachlan: November/08

 

 

**Please note: that this is just to serve as an information resource, this is not to be used for diagnosis.  If you have any medical concerns or questions, please see your doctor for a proper diagnosis.

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.

SAD – Seasonal Affective Disorder

An estimated 2 to 3% of Canadians suffer from seasonal affective disorder (SAD), a type of depression that seems to be related to the amount of sunlight that you are exposed to.

Weather often affects people’s moods.  Sunlight breaking through clouds can lift our spirits, while a dull, rainy day may make us feel a little gloomy.  While noticeable, these shifts in mood generally do not affect our ability to cope with daily life.  Some people, however, are vulnerable to a type of depression that follows a seasonal pattern. For them, the shortening days of late autumn are the beginning of a type of clinical depression that can last until spring.  This condition is called “Seasonal Affective Disorder,” or SAD.

A mild form of SAD, often referred to as the “winter blues,” causes discomfort, but is not incapacitating. However, the term “winter blues” can be misleading; some people have a rarer form of SAD which is summer depression.  This condition usually begins in late spring or early summer.

Awareness of this mental condition has existed for more than 150 years, but it was only recognised as a disorder in the early 1980s.  Many people with SAD may not be aware that it exists or that help is available.

SAD can be a debilitating condition, preventing sufferers from functioning normally.  It may affect their personal and professional lives, and seriously limit their potential.  It is important to learn about the symptoms, and to know that there is treatment to help people with SAD live a productive life year-round.

What Causes SAD?

Research into the causes of SAD is ongoing.  As yet, there is no confirmed cause.  However, SAD is thought to be related to seasonal variations in light.   A “biological internal clock” in the brain regulates our circadian (daily) rhythms.  This biological clock responds to changes in season, partly because of the differences in the length of the day.  For many thousands of years, the cycle of human life revolved around the daily cycle of light and dark.  We were alert when the sun shone; we slept when our world was in darkness.  The relatively recent introduction of electricity has relieved us of the need to be active mostly in the daylight hours.  But our biological clocks may still be telling our bodies to sleep as the days shorten.  This puts us out of step with our daily schedules, which no longer change according to the seasons.  Other research shows that, neurotransmitters, chemical messengers in the brain that help regulate sleep, mood, and appetite, may be disturbed in SAD.

What are the Symptoms?

SAD can be difficult to diagnose, since many of the symptoms are similar to those of other types of depression or bipolar disorder.  Even physical conditions, such as thyroid problems, can look like depression.  Generally, symptoms that recur for at least 2 consecutive winters, without any other explanation for the changes in mood and behaviour, indicate the presence of SAD. They may include:

  • change in appetite, in particular a craving for sweet or starchy foods
  • weight gain
  • decreased energy
  • fatigue
  • tendency to oversleep
  • difficulty concentrating
  • irritability
  • avoidance of social situations
  • feelings of anxiety and despair

The symptoms of SAD generally disappear when spring arrives. For some people, this happens suddenly with a short time of heightened activity.  For others, the effects of SAD gradually dissipate.

Symptoms of summer depression may include:

  • poor appetite
  • weight loss
  • trouble sleeping

 

Who is at Risk?

Research in Ontario suggests that between 2% and 3% of the general population may have SAD.  Another 15% have a less severe experience described as the “winter blues.”

SAD may affect some children and teenagers, but it tends to begin in people over the age of 20.  The risk of SAD decreases with age.  The condition is more common in women than in men.

Recent studies suggest that SAD is more common in northern countries, where the winter day is shorter. Deprivation from natural sources of light is also of particular concern for shift workers and urban dwellers who may experience reduced levels of exposure to daylight in their work environments.

People with SAD find that spending time in a southerly location brings them relief from their symptoms.

How is SAD Treated?

If you feel depressed for long periods during autumn and winter, if your sleep and appetite patterns change dramatically and you find yourself thinking about suicide, you should seek professional help, for example, from your family doctor.  There is effective treatment for SAD. Even people with severe symptoms can get rapid relief once they begin treatment.

People with mild symptoms can benefit from spending more time outdoors during the day and by arranging their environments so that they receive maximum sunlight.  Trim tree branches that block light, for example, and keep curtains open during the day.  Move furniture so that you sit near a window.  Installing skylights and adding lamps can also help.

Exercise relieves stress, builds energy and increases your mental and physical well-being.  Build physical activity into your lifestyle before SAD symptoms take hold.  If you exercise indoors, position yourself near a window.  Make a habit of taking a daily noon-hour walk. The activity and increased exposure to natural light can raise your spirits.

A winter vacation in a sunny destination can also temporarily relieve SAD symptoms, although symptoms usually recur after return home. At home, work at resisting the carbohydrate and sleep cravings that come with SAD.

Many people with SAD respond well to exposure to bright, artificial light. “Light therapy,” involves sitting beside a special fluorescent light box for several minutes day.  A health care professional should be consulted before beginning light therapy.

For people who are more severely affected by SAD, antidepressant medications are safe and effective in relieving symptoms.  Counselling and therapy, especially short-term treatments such as cognitive-behavioural therapy, may also be helpful for winter depression.

Increasing your exposure to light, monitoring your diet, sleep patterns and exercise levels are important first steps.  For those who are severely affected, devising a treatment plan with a health care professional consisting of light therapy, medication and cognitive-behavioural therapy may also be needed.

Where to Go For More Information

For further information about seasonal affective disorder, contact a community organization like the Canadian Mental Health Association to find out about support and resources in your community.

Canadian Mental Health Association Disclaimer:

This site provides general information only and may or may not reflect the position of the Canadian Mental Health Association (CMHA).  Information provided is not a substitute for professional advice.  If you feel that you may need medical advice, please consult a qualified health care professional.  CMHA makes every reasonable effort to ensure that the information is accurate at the time of posting.  We cannot guarantee the reliability of any information posted.

 

 

This article is taken from the Canadian Mental Health website.  After researching much information about this topic, many had very similar information.  I felt this one would best suit our purposes.

Renee MacLachlan – Jan. 2010

Time

A good question don’t you think?  A question I’m sure, no…I KNOW,  many of us ask ourselves from time to time.

Is it time for this…

Is it time for that…

Do you think it’s time we…

If only we had time…

There never seems to be enough time…

So many questions about time.  What is it TIME for you to do this year?

Going back to the focus aspect as mentioned in a previous blog post a couple days ago, many people really think this year…It’s Time!! for them.

For myself, life has been and is busy.  It tends to be more about others than myself much of the TIME, something I am working on this year as well.  I know I need to make more TIME to do things for me, we all do, and many of us have a hard TIME finding that TIME to do so.

Is it our age that seems to kick in the TIME issue?  Are you finding as you get older, there seems to be less TIME to do some of the things you wanted and/or had hoped to do?

I have started making more TIME to do the things that I really want and need to do.  Life will always be busy, so if you’re waiting for something to happen or to change so that things will perhaps slow down so you CAN do some of those things…think again!

It’s all about YOU!  Only YOU can make an effort and make that time.

I am truly hoping and believing this is going to be my year!  It’s TIME!

I am officially registered for the first of a few courses I want to take.  Courses that will benefit me and what I am striving to do business-wise.  My Community Advocacy Techniques course starts next week!! :)    Human Rights in Ontario begins in April. :)  I’m excited!

All it takes is TIME and it is indeed TIME!  :)

If you are having problems with finding TIME for you, start with something small like 15min a day to stop and do something you like, something for YOU.  Just 15min for the first week, and then gradually increase in small increments, whether they be 5 or 10min increments.

It will take a little TIME to start seeing the benefits, but you will!  :)

If time management is an issue for you, there are many sites with alot of information on different TIME Management Techniques and I’m sure you’ll be able to find one that fits/suits you.  :)

So, as I’ve been doing for the past few days…I’ve also been making TIME to be more regular with posting here on my blog, I’m feeling good about it!  :)

And now, it’s TIME for me to carry on with my evening. :)

Have a wonderful night my friends!