I felt misled

This morning my eye caught a post from a special needs page that mentioned hope for the continual grief special needs parents experience. I chose to read it. Perhaps because of where I am at this stage of things, but I actually felt ‘misled’ when I read it! It felt weird having that thought/feeling about this article.

The truth is, parents of special needs children deal with unique grief from the moment of diagnosis of their child(ren). It’s a different type of grief and many don’t understand it. Parents of special needs children can get struck with grief at any moment and it’s a cycle that happens again and again. They don’t always go through the regular stages and find resolution.

What made me think I was misled was that when the article asked what grief experiences have snuck up on you lately, the answers all had to do with children that were still alive. I was taken aback as I had thought the article was going to be about loss. The loss of a child. Although the article was still true with it’s content, I felt misled.

We as parents have been grieving for our children all along. It’s difficult to explain but there is a different type of grief associated with raising a child with special needs. Some may say it’s not grief, but the reality is that it is a type of grief even if we don’t want to admit it. The grief we experience is sudden situations and/or circumstances that remind us that our child(ren) aren’t able to do certain things as their peers do. They aren’t at ‘level’s’ they should be for their age etc…the list could go on…

To us, our child(ren) is/are perfect. Even with our own imperfections, we are all perfect in God’s eyes. We are who we are for a reason and there is a plan for each and every one of us. Even as parents, we know our children are different, but this is normal for them and normal for us.

I hadn’t really thought about, that to a degree I was also grieving during those years. I never looked at things Patrick couldn’t do as a loss though because there were so many other things he could do even if it had to modified for him to do it. He smiled so much and so often, how could one look at it as grief?

The grief now is SO different. I have those moments when something all of a sudden strikes me and I am in tears, wishing with all my might that Patrick was still here. That I could hear his laugh, see his smile, hold his hand and get a hug from him.

For myself, I feel a loss in my self esteem and confidence. I hesitate to make decisions on my own now, which sounds odd because I had to make decisions ALL the time with regards to Patrick’s life! I’ve gained weight (even watching what I eat) and can’t seem to lose the weight as easily as I could before.  Tired feels like part of my vocabulary now. I feel like I’ve been running non-stop for almost 17 years, and now my body seems to feel like it needs time to recuperate from all those years. It’s frustrating because all these losses I feel, I didn’t feel before when Patrick was here.

I think I feel like Patrick made me strong. He was strong, and maybe he felt I was too and we fed off each other that way, and it worked!  We were a great team together!

As many of you know we started Grief Group a couple weeks ago.  With many being away this week, group was cancelled, but next week I am going to share this with the other parents attending and get some feedback and thoughts on this.

Let me finish off though with this…

Although the loss is huge, the JOYS are many!  Recalling the joy of who he was, how he interacted with others, the way he made people feel and especially how happy and proud he made us feel…that will never go away!!

Focusing on the JOYS makes the loss a little easier each time.  Sharing about him makes the loss a little easier each time.  Some may tire of hearing about him, but we never will!  His impact and legacy has helped and will continue to help many people and for that we are truly grateful!!

Thank you to everyone who has been so supportive, loving, kind and generous.  We couldn’t have done it without you either.  Thank you for being a part of our lives, whether near or far, we love you all!

JOY!

His laugh was infectious! He loved to laugh!!

JOY

Patrick & Bruiser!

Family JOY

Playing with the camera on Patrick’s iPad. He loved seeing Auntie Rosanne!

Heroes in the home

What is your definition of a Hero?  Do you know any Heroes?  Do you consider anyone a Hero?

Have YOU ever been called a hero?

What a way to start off this post asking so many questions.  Wait, I have more!

Are you a caregiver?  A Mom?  Do you look after a family member or friend?  If so, YOU are a Hero!

There are different definitions of a Caregiver.  Wikipedia has an interesting definition of Caregiver:

Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.

The words may be prefixed with “family” “spousal”, “child” to distinguish between different care situations, and also to distinguish them definitively from the paid version of a caregiver, a Personal Care Assistant or Personal Care Attendant (PCA). Around half of all carers are effectively excluded from other, paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. The term “carer” may also be used to refer to a paid, employed, contracted PCA.

The general term dependant care (i.e., care of a dependant) is also used for the provided help.[1] Terms such as “voluntary caregiver” and “informal carer” are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual’s life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives.

More recently, Carers UK has defined carers as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”. Adults who act as carers for both their children and their parents are frequently called the Sandwich generation.

A general definition of a carer/caregiver is someone who is responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age. To help caregivers understand the role they have taken on, “Next Step in Care”[2] outlines the following:

You are a caregiver if you:

  • Take care of someone who has a chronic illness or disease.
  • Manage medications or talk to doctors and nurses on someone’s behalf.
  • Help bathe or dress someone who is frail or disabled.
  • Take care of household chores, meals, or bills for someone who cannot do these things alone.[3]
It’s my Duty Isn’t it?

With an increasingly aging population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well.

What is YOUR description of a Caregiver?

As caregivers, I don’t think we give much thought to what we do.  We just do it.  It’s natural, it’s what we do.  We become masters of multi-tasking, juggling appointments, preparing lunches and making meals, transportation, cleaning, laundry and more.  We are teachers, doctors, nurses, chefs, handyperson’s, therapists, advocates/speakers, to name a few, all wrapped into one.

When was the last time someone complimented you on everything you do?  When was the last time someone thanked you for all you do?

When was the last time someone called YOU a Hero?

It’s not always easy or comfortable to hear those words, because to us it’s what we do all the time.  It’s our life!   It’s still feels good to hear them though, when we do.

Often people ask me; ‘How do you do it?’  My response of course is, ‘Do what?’  They reply;  ‘Do everything you do with/for your son, and all the things you are involved in.’  What is our usual reply to a scenario like this?  This is my life, I just do it.  Just like you do everything you do in your life and for those around you.

Being Mom to a child with disabilities, we face challenges that many others don’t have.  We all have different challenges in life we go through, but some are more specific, I’m sure you understandwhat I mean.  I hope you do.  We don’t look for pity.  We don’t want you feeling sorry for us and all we go through.  We are proud, just like you!   It’s difficult for many of us to ask for help and/or support for whatever it is we might need.  Although there are days we think we must be superman, we know we aren’t.  It’s tough for us to take time for ourselves, but we learn, slowly and it’s something I don’t think any of us perfect.

A week or two ago, one of my son’s workers asked my permission to nominate me for an award through CCAC (Community Care Access Centre).  I wasn’t sure what it was about or for, but she needed my permission to submit my name.  Since things have been so busy with Patrick the past month, all I got was that it had something to do with being a caregiver.  I gave my permission and honestly didn’t think about it again, till this past Friday when I received a letter in the mail from CCAC.

An initiative of South West CCAC and the healthline.ca

Congratultions!

We are pleased to inform you that Michelle S. has nominated you for a

HEROES IN THE HOME Caregiver Recognition Award!

There is a special celebration  on October 20th to receive this award.

WOW!  How sweet of Michelle to think so much about me to feel I would give justice to and deserve this recognition.   I really am blessed!  The girls who come work here, love working for/with Patrick and I.  We become like family and care for and about each other.

How amazing someone thinks of me as a Hero!  It’s an indescribeable feeling.  I’m just me after all, always am, have been and always will be.

I am very grateful for everyone in our life who loves and supports us.  I am grateful for all the things, whether big or small that anyone does with and for us. I often wonder how I could ever repay everyone for all the kindness, love, support etc that they have shown us.  It truly is overwhelming some days and I don’t think I could find enough words to express it.

For tonight though, I will say thank you!  Thank you to all of you!  May you know you are loved and thought of fondly often.

For tonight, I will check on Patrick before I crawl into my bed, and fall asleep knowing that someone thinks I’m a Hero.  And I will let myself have warm fuzzy feelings, even if it’s for a short time because tomorrow I will wake up and do it all over again.

Let me leave you with one more thought…

YOU are a Hero too!! 

Summer so far

Patrick’s Summer – 2011

Patrick is having a busy summer.  Quite a number of appointments this summer, new orthotics are being made and looking at some different ideas for seating to keep him sitting up straighter and better in his wheelchair, along with a number of other follow ups regarding his potassium levels and his blood pressure.  We have recently found out that Patrick’s kidneys are only working 60-70% normal, so he is being followed closely to keep an eye on their function.

Casting for new Orthotics

Patrick started attending respite this summer, two weekends and 1 week away throughout June/July and August.  He has been enjoying them.  The week in August is the first time for that length of time he’s been away with people he didn’t know.  He’s had a couple rough moments, but overall enjoying himself.  He has gone to the movies, bowling and gone on some walks, done crafts…attempted some swimming and more.

Patrick will be attending Drama Camp again this year.

This program is put on 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 will attend 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 are doing 3 plays.  The True Story of the 3 Little Pigs, Sounds of the Night and The Eighth Dwarf.  Each child has their lines for the plays programmed into their communication devices prior to the camp.  Patrick reminds me every day to go over his plays with him, so he can 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 have a great time!  They receive a certificate, a poster, a shirt, and a program.  Wonderful memories indeed!

We will be starting to work 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 going into high-school; it will be a big change for him.  We went out a couple weeks ago to get his school uniforms.  He’s been counting down to school all summer!  He is excited and happy that school will be back soon!  He can’t wait to see his friends and the EA’s!

Trying on School Uniforms for Highschool

 

Persons with disabilities play sports too!

The other day while at the Orthotics office with my son, I noticed and grabbed a magazine called Play2Podium.  It states it’s a magazine for special needs families.  This was a free sample copy of the Winter 2011 edition.

While going through it I found some great information on sports for people with disabilities to participate in.  I did some more looking and found some more sites!  I’ve bookmarked all the ones I have found so far into one folder and will certainly keep them handy when I hear of others looking for something to get involved in.

I wanted to share them with you.  Some will fall into the winter sports and as you know, winter will be here soon enough! 😉

Canadian Amputee Sports Associationhttp://canadianamputeesports.ca/index.html

Canadian Blind Sportshttp://canadianblindsports.ca/eng/index.htm

Canada Para-Alpine Ski Teamhttp://canski.org/para-alpine-ski-team

The Canadian Cerebral Palsy Sports Associationhttp://ccpsa.ca/en/default.aspx

Canadian Electric Wheelchair Hockey Associationhttp://cewha.ca/

Canadian Wheelchair Sports Associationhttp://www.cwsa.ca/en/site/

Canadian Association for Disabled Skiinghttp://disabledskiing.ca/

Ontario Sledge Hockey Associationhttp://ontariosledge.com/

ParaSport Ontariohttp://www.parasportontario.ca/Default.aspx

Wheelchair Basketball Canadahttp://www.wheelchairbasketball.ca/en/homePage.aspx

ParaEquestrian Canadahttp://www.equinecanada.ca/para-equestrian/

Ontario Blind Sports Associationhttp://blindsports.on.ca/

Wheelchair Tennishttp://www.tenniscanada.com/tennis_canada/Pub/DisplayPage.aspx?enc=WqmHTIXb3hZBDLgekBXg/g16dCnUPZfiIR142ql1ulNxfx5r0F1EFukdEywK7teN7x7gN9vSqE+iOWSfJQywCw==

Special Olympics Canadahttp://www.specialolympics.ca/

Special Olympics Ontariohttp://www.specialolympicsontario.com/

Special Olympic Sports:

Winter Sports

  • Alpine Skiing
  • Cross Country Skiing
  • Curling
  • Figure Skating
  • Floor Hockey
  • Snowshoeing
  • Speed Skating

Summer Sports

  • Aquatics
  • Athletics (Track & Field)
  • Bowling (5 & 10 Pin)
  • Power-lifting
  • Rhythmic Gymnastics
  • Soccer
  • Softball

Canadian Wheelchair Curling Instruction Videoshttp://www.curling.ca/start-curling/wheelchair-curling-instruction/

See anything of interest to you or a family member?  Check it out further by visiting their website.  So much is gained by participating!

I will add more as I come across them, but I think we’ve got a good start here! 🙂

Looking to volunteer?  Each of these sports I’m sure welcome volunteers! 🙂 Contact the sites for more information on volunteering and/or if you have questions about the sport.

Till next time…

Get involved and play hard! 🙂

People First – Not disability

This is my little rant for today!

How many times have you heard someone speaking about or describing someone as a ‘disabled person/child’?  How many times have YOU yourself used that terminology as well?

Have you ever been given a ‘name’, nickname or otherwise for something you did that you didn’t like or care for, yet people still refer to you by that name to this day?  This hopefully gives you a little bit of an idea of what I’m trying to say here.  It’s not exact, but the context is similar.

What can’t people look at the PERSON first!?!  That’s who they are after all.  A person/child…who happen to have some challenges and/or have a disability(ies).

I DO NOT have a disabled child!!  I have a CHILD who happens to have a disability!

He is NOT ‘that kid’!  He is NOT that ‘disabled child/boy’!  His name is Patrick…and if you ever have the pleasure and honour of meeting him one day…you will meet a great young man, with many wonderful qualities who will bring a smile to your face like no other!

I don’t want you feeling sorry for me either because my son is who he is.  I’m very proud of him!  Accessibility may hinder some of the things he can do and access, but he can do whatever he wants to do and try!   He just might have to do it differently!

People with disabilities don’t want you feeling sorry for them.  They deserve respect like everyone else.

Society is slowly changing it’s outlook, realizing and accepting that we all have the same rights, and that making our cities as accessible as possible for everyone is certainly the right thing to do!  Whether the disability is visual, physical, mental and even sometimes invisible…just to name a few…in God’s eyes there are no differences…just people!

We should all look at people and things through God’s eyes…imagine how great that would be!!

Thanks for letting me rant/vent today!  If you have any comments/stories to share, or any questions, please feel free to comment or email me.  I’d be happy to reply!

Let me end by sharing the 2 Gold ribbons my son brought home from track and field yesterday!  Does he look proud or what!!  I know I am! 🙂

Have a great day friends!!

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!